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Autism Politics & Initiatives
The Autism Market
Grants , Funded Projects & Money Raised
Pivotal
Marketing & Media Attention
Organizations & Companies
Autistic Community & Allies
Note: “Autism Awareness” campaigns by parent-led organizations, including their initiatives and networks, directly drive today’s booming Autism Market.
I’ve been working to build this database to this level on the site for some years now. I’m finally at the point I can start showing the timeline of overlapping categories like autism autism marketing, legislation, funding/grants, and so on. This is still work in progress. Please bear with me as I continue to build this timeline, and please use it for your advocacy work if it’s of help.
Autistically,
Eve Reiland
My Notes So Far:
The Autism Market:
“The increasing government funding, sponsored awareness programs, and growing research & development are also boosting the global market.”
In the United States, Autism Speaks and other parent-founded autism organizations networked together and launched a marketing tsunami that included tragedy and burden narrative, promoted autism propaganda and myths, and built an army of ‘parent warriors’ (with a hero-narrative wrapped around them) to lobby support for legislation that forced insurance coverage for Applied Behavioral Analysis (ABA) for Medicaid, military families and later with state-by-state legislation. These organizations have held the public narrative for decades now, harming autistics world with their ’crusade’ to save us from being Autistic.
ABA is known as Autistic Conversion Therapy in the Autistic Community.
Keywords Words In ABA marketing and media:
Applied Behavioral Analysis (ABA), Positive Behavioral Support (PBS), early detection, early diagnosis, early intervention, autism treatment, autism recovery, autism cure, BCBA, behavioral health, compliance, BCBA & more
Autism prevalence numbers generally kick off the these parent-led organizations press releases and outreach. In the early years, the word autism epidemic, autism tsunami and more were used to describe this influx of Autistics being born. To be clear, this was a marketing twist on the numbers. There is, and never was, an ’autism epidemic.’ Autism prevalence reporting was to get an accurate count of the Autistic population. – which was incredibly undercounted and misunderstood The criteria for that diagnosis changed with better understanding of what being Autistic meant. To compare numbers from 80 years ago to now – it’s comparing apples to oranges. It’s not logical. And the absurd question about ’where were all these kids 100 years ago? Autistics were diagnosed with childhood schizophrenia back then and … well … yeah, it’s not a mystery. It never was. I will have more to share about this soon. …….
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Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
1959
1959
The beginnings of ABA can be traced back to Teodoro Ayllon and Jack Michael’s study “The psychiatric nurse as a behavioral engineer” (1959) that they published in the Journal of the Experimental Analysis of Behavior (JEAB).
Ayllon and Michael were training the staff and nurses at a psychiatric hospital how to use a token economy based on the principles of operant conditioning for patients with schizophrenia and intellectual disability, which led to researchers at the University of Kansas to start the Journal of Applied Behavior Analysis(JABA) in 1968.
1965
1965
Autism Society of America founded by by Bernard Rimland and Ivar Lovaas together with Ruth C. Sullivan.
This is a parent-founded autism organization.
1965
In 1965, Lovaas published a series of articles that outlined his system for coding observed behaviors, described a pioneering investigation of the antecedents and consequences that maintained a problem behavior. and relied upon the methods of errorless learning that was initially devised by Charles Ferster to teach nonverbal children to speak.
Lovaas also described how to use social (secondary) reinforcers, teach children to imitate, and what interventions (including electric shocks) may be used to reduce aggression and life-threatening self-injury.
1968
1968
Researchers at the University of Kansas to start the Journal of Applied Behavior Analysis (JABA).
Notable graduate students from the University of Washington include Robert Wahler, James Sherman, and Ivar Lovaas.
Lovaas established the UCLA Young Autism Project while teaching at the University of California, Los Angeles.
1975
1986
1987
1987
Study on Applied Behavioral Analysis (ABA) is published.
It was suggested that with a comprehensive ABA program of 40 hours a week, about half of Autistic kids were indistinguishable from non-Autistic kids at age 7. — But even within the field, the research has been questioned.
This behavioral therapy was pioneered by Dr. O. Ivaar Lovaas, professor emeritus at the University of Californiaat Los Angeles
1988
Alpine Learning Group is formed by parents of an Autistic and behavior analysists, including Bridget Taylor, in Paramus, New Jersey (USA)
also included: Ely Center for Adult Learning
1989
Alpine Learning Center is officially launched. The school has several programs grounded in the principals of ABA. It is one of the first ABA-based schools to open in the USA.
1990
1990
Individuals with Disabilities Act (ADA) of 1990
The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.
The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else.
The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion.
It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.
1991
1991
The Marcus Institute launched by Bernie and Billi Marcus in Atlanta, Georgia
Bernie Marcus and his wife Billi established The Marcus Institute in Atlanta, Georgia. Marcus later contributed $25 million to the launch of Autism Speaks.
1992
Autism Network International (ANI) is founded by Jim Sinclair, Kathy Grant and Donna Williams.
This organization was Autistic founded
Founded by parents of an Autistic, Dan Marino and Claire Marino in 1992.
1993
“Don’t Mourn For Us” is published by Jim Sinclair in Our Voice, Vol. 1, No. 3. This is a very important piece in the Autistic Civil Rights movement.
1994
Simons Foundation founded by Jim & Marilyn Simons, ‘affected by autism’
1994
National Alliance for Autism Research (NAAR) founded by Eric London, Karen Margulis London, parents of an Autistic.
NAAR Projects/Initiatives: Autism Tissue Program, High Risk Baby Sibling Autism Research Project, NAAR Genome Project, NAARRATIVE
NAAR will merge with Autism Speaks in 2006
1995
1995
Cure Autism Now founded by Jon Shestack & Portia Iversen, parents of an Autistic.
CAN Projects/Initiatives: Autism Genetic Resource Exchange (AGRE), Autism Treatment Network (ATN),Clinical Trials Network (CTN) , and Innovative Technology for Autism (ITA)
CAN will merge with Autism Speaks in 2007
1995
Defeat Autism Now! (DAN!) was launched by the psychologist Bernard Rimland and a co-founder of Autism Society of America. Rimland was also a father of an Autistic.
1996
Alpine Learning Group: Training manual Behavioral intervention for young children with autism: A manual for parents and professionals (1996), published.
It was edited by Catherine Maurice, Ph.D., a New York City parent advocate who hired Taylor to run her two children’s early ABA home programs in 1987.
1997
1997
Collaborative Programs of Excellence in Autism network created by NICHD.
1998
1998
Autism Coalition for Research and Education (ACRE) was launched by parents.
1998 a group of parents recognized the power of coordinated fundraising, awareness, and advocacy initiatives and formed the Autism Coalition for Research and Education.
1998
UC Mind Institute founded by Chuck and Sarah Gardner, parents of an Autistic.
And staff: Dr. Leonard Abbeduto
1999
1999
The Autism Coalition (ACRE) is launched by Kevin Murray & 3 other board members.
This parent-founded organization’s goal was to play a critical role to bring autism organizational leaders together to identify common ground, raise funds and public awareness.
First Signs is founded by Nancy Wiseman
1999 – 2005
NECC was part of the Autism Coalition For Research & Education (ACRE).
2000
2000
The Children’s Health Act of 2000
Mandated establishment of the Interagency Autism Coordinating Committee (IACC) to coordinate autism research and other initiatives within the Department of Health and Human Service.
2001
2001
Autism Coalition: Congressional Autism Caucus
U.S. Representatives Christopher Smith (R-NJ) and Michael Doyle (D-PA) founded the bi-partisan Autism Caucus.
The Caucus, formally known as the Coalition for Autism Research and Education (CARE), currently includes over 170 members from over 40 states.
2003
August 2003
Autism Coalition: Congressional Autism Caucus
In 2001, U.S. Representatives Christopher Smith (R-NJ) and Michael Doyle (D-PA) founded the bi-partisan Autism Caucus. The Caucus, formally known as the Coalition for Autism Research and Education (CARE), currently includes over 170 members from over 40 states.
November 19 – 20 2003
Autism Summit Conference: Developing a National Agenda
The Autism Coalition was pleased to support and participate in the Interagency Autism Summit held in Washington D.C.
November 19, 2003
Government Mapping Out A Strategy to Fight Autism
By JANE GROSS (NYT)
ABSTRACT – Federal officials, responding to skyrocketing number of diagnoses of brain disorder autism in children, plan to unveil at conference on autism, Washington, DC, first long-term interagency plan to deal with problem; plan includes goals like development of teaching methods that will allow 90 percent of autistic children to speak, identification of genetic and nongenetic causes of condition and adequate services for all afflicted children within 10 years; experts say most effective therapy, early, intensive behavior therapy, is poorly understood and in short supply; graph of autism cases and special education programs (M)
2003
Autism Cabal meets and networks: Human Genome Project Celebration Dinner
Bob & Suzanne Wright, Jim & Marilyn Simons, Harry & Laura Slatkins, Tom Insel, Deedra Blair, (later Alison Singer joins)
2003
Simons Foundation Autism Research Initiative (SFARI) founded by Jim & Marilyn Simons who are “affected by autism.”
2003
Next for Autism founded by Harry & Laura Slatkin, parents of an Autistic
Board members/Staff: Deedra Blair, Michelle Smigel, Suzanne Aisenberg, Michael Auerbachj, Sharon Cunningham, Dr. Orrin Devinsky, Karen Siff Exkorn, Esther Fein, Rick Goldsmith, Doug Herzog, Tommy Hilfiger, Yie-Hsin Hung, Steven J. Kantor, Arlene Maidman, David Remnick, Bellanca Smigel Rutter, Robert Smigel, Jon Stewart, Tracey Stewart, Patricia Cayne, Ilene Lainer, Ophelia Rudin, William Rudin
2004
2004
Department of Defense Appropriations Act 2005 (H.R. 4613 & S. 2559)
Bill lobbied by: Cure Autism Now (CAN)
2004
Aspies For Freedom (AFF) was founded in 2004, and established June 18 as Autistic Pride Day starting in 2005. AFF was also instrumental in initiating protests against the National Alliance for Autism Research, Cure Autism Now, and the Judge Rotenberg Center.
2005
2005
Autism Network International: The Development of a Community And Its Culture
By Jim Sinclair
This article will describe how one particular group of autistic people joined together on the basis of common interests, and grew into a community. Along the way I will tell you a bit about the culture that has developed within that community.
It is my hope that through this introduction to my community, you will begin to reconsider many of the assumptions you may have about autistic social characteristics. Is it always correct to view differences between the behavior of autistics and NTs as “symptoms” of some “disorder” in autistic people? Is it necessarily helpful to respond to such differences by trying to teach autistic people to emulate NT social behaviors so they can “fit in” with NT culture? What alternatives might there be for addressing social difficulties between autistic and NT people? These are some questions you should ask yourself as you read this article.
2005
Combating Autism Act of 2005 [H.R. 2421]
Bill lobbied by: Autism Speaks, American Occupational Therapy Assn, Cure Autism Now (CAN), IKON Public Affairs, Jefferson Regional Medical Center, New England Center for Children, Altoona-Blair County Development Corp, Autism Coalition for Research & Education (ACRE)
February 11, 2005
Autism Speaks is founded by Bob & Suzanne Wright with family member Katie Wright and family friend, Bernie Marcus. Grandparents (and parent) of an Autistic. .
Board/staff: Billy Mann, Harry Slatkin, Laura Slatkin, Alison Singer,
Curtis Arledge, Tom Bernard, Scott R. Carpenter, Jennifer Caserta, Joseph T. Coyle, Barry R. Feirstein, Adam Frazier, Darren Goode, Brian L. Harper, Matthew Higgins, Adrian M. Jones, Tim Jones, Aidan Kehoe, Kevin J. Murray, Jacquelyn “Jakki” Nance, Herbert Pardes, Jamie T. Richardson, Chuck Saftler, Stuart Savitz, Stephen Shore, Steven P. Stanbrook, Cheryl Vitali, Lisa Yang, Mel Karmazin
Katie Wright leaves in 2007 for Generation Rescue. Alison Singer leaves in 2009 and launches Autism Science Foundation (ASF).
2005
Department of Defense Appropriations Act 2005 (H.R. 4613 & S. 2559)
Bill lobbied by: Cure Autism Now (CAN)
2005 (109th Congress)
Bills lobbied by: Autism Speaks
H.R.2863 – Department of Defense, Emergency Supplemental Appropriations to Address Hurricanes in the Gulf of Mexico, and Pandemic Influenza Act, 2006
S.843 Combating Autism Act of 2006
H.R.2421 Combating Autism Act of 2005
H.R.3010 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2006
H.J.RES.68 Making continuing appropriations for the fiscal year 2006, and for other purposes.
H.R.2528 Military Quality of Life and Veterans Affairs Appropriations Act, 2006
H.J.RES.75 Making further continuing appropriations for the fiscal year 2006, and for other purposes.
H.J.RES.72 Making further continuing appropriations for the fiscal year 2006, and for other purposes.
S.1422 Mercury-Free Vaccines Act of 2005
H.R.881 Mercury-Free Vaccines Act of 2005
2005
Autism Speaks established the Parents as Partners program.
2005
NECC was one of the clients lobbying on H.R.2421, the Combating Autism Act of 2005.
The Combating Autism Act, and later state-by-state legislation to reform insurance to cover Autistic Conversion Therapy (ABA) through Medicaid and private insurances.
February 21, 2005
by Autism Speaks
During the week of February 21, the networks of NBC News devoted special coverage to autism, with extensive reporting on Today, Nightly News with Brian Williams, CNBC, MSNBC (and MSNBC.com), NBC’s owned-and-operated stations, and Telemundo.
May 19, 2005
The Combating Autism Act of 2005 would provide grant programs for every state to develop autism screening, early diagnosis and intervention programs for children – perhaps the most important thing that could happen, short of a cure. The Act also increases funds for CDC epidemiological surveillance programs, and reauthorizes the Interagency Autism Coordinating Committee (IACC), established in the Children’s Health Act of 2000, to coordinate all efforts within the Department of Health and Human Services concerning autism, including activities carried out through the CDC.
The introduction of the Combating Autism Act of 2005 could not have happened without the hundreds of thousands of active parents and concerned Americans around the country.
“Unraveling the mysteries of autism demands a large, collaborative effort on many fronts,” said Prisca Chen Marvin, board chair of the National Alliance for Autism Research (NAAR) and the mother of a child with autism. “This legislation is critical to our ability to continue advancing our search for answers — for children and families today and for future generations.”May 19, 2005
Autism Speaks Appoints Mark Roithmayr as President
Alison Tepper Singer has been the Acting CEO of Autism Speaks.
As the parent of an autistic daughter, Singer was able to address and outline firsthand the day-to-day challenges affecting children and families with autism. A graduate of the Harvard Business School and producer of the CNBC series “Autism; Paying the Price”, Singer developed the blueprint for the organization and, in less than 2 months, consolidated relationships in the medical and fundraising communities.
“As the mother of a child with autism, I am thrilled to see someone with Mark’s broad and deep advocacy experience lead Autism Speaks,” said Singer. “I look forward to working with him as we continue to build awareness of the autism epidemic, aid families seeking treatment and education programs, and support scientists seeking a cure.”
Working in tandem with Roithmayr, Singer will remain at Autism Speaks and will focus on strategic planning and communication for the foundation. She will also join the board of directors of Autism Speaks.
July 7, 2005
American Century Championship to Raise Awareness, Funds for Autism
Autism Speaks is 2005 Beneficiary
Dan Marino, celebrity golfers to aid new umbrella charity seeking treatment, cure for epidemic children’s brain disorder“One in 166 children will be diagnosed with autism spectrum disorder,” said Alison Singer, Autism Speaks Senior Vice President and the mother of a child with autism.
“Twenty years ago that number was one in 10,000. Every 20 minutes another set of parents receives the life-shattering news that their child has autism. We are grateful to American Century Investments for the opportunity to help increase awareness of this epidemic and to spread the message that early intervention is our best weapon.”
August 1, 2005
Autism Coalition for Research and Education (ACRE) merges with Autism Speaks.
August 3, 2005
Jerry Seinfeld and Paul Simon to Perform ‘One Night Only: A Concert for Autism Speaks
“I became aware of autism through some friends who are dealing with it and it is heartbreaking. I wanted to do something to help address this problem and decided to do a show to raise funds for research,” said Seinfeld.
“I was very impressed with the great work of Autism Speaks. I am happy to join forces with them and Bob and Suzanne Wright to help raise awareness of this prevalent issue.”
September 8, 2005
Children With Autism Affected By Katrina Finding Help Through Autism Organizations
Order and consistently administered therapeutic interventions are critical to the affected child’s and family’s well being.
According to Katrina victim, Sheila L. Ealey, her six-year-old son has regressed significantly since Katrina hit.
“Temple was receiving extensive behavioral and biomedical therapies and was doing so well. He was mainstreamed with an aide half day in a regular kindergarten with intensive services in the afternoon. He is now flapping, stimming, banging his head, hitting me, crying and making strange noises. It’s so sad to see all of the work that has gone into the last four years for him leave within a week of being without therapy and his familiar surroundings.”
Autism leadership organizations participating in the relief effort through AutismCares include:
Autism Society of America (ASA), Autism Speaks, The New Jersey Center for Outreach and Services for the Autism Community (COSAC), Cure Autism Now (CAN), The Doug Flutie Jr. Foundation, First Signs, The National Alliance for Autism Research (NAAR), Organization for Autism Research (OAR), Princeton Autism Technology (PAT), The Southwest Autism Research and Resource Center (SARRC), TalkAutism, Unlocking Autism
November 3, 2005
Autism Speaks Launches New Website
“When my daughter was diagnosed with autism I was overwhelmed and didn’t know where to turn for information, “ said Alison Singer, senior vice president of Autism Speaks.
“Our goal in designing the new site was to create an organized source of reliable, authoritative information on treatments, medical options and legal rights, so that parents can make informed decisions.”
December 7, 2005
Autism Speaks, Elizabeth Glaser Pediatric AIDS Foundation Both Winners in ‘Apprentice’ Finale
Both Donald Trump and I strongly believe that investing in charitable causes is just good business,” said Mark Burnett, executive producer of The Apprentice, and board member of the Elizabeth Glaser Pediatric AIDS Foundation.
“Building awareness of this devastating and prevalent disorder is among our top priorities,” said Alison Singer, Senior Vice President of Autism Speaks.
“We hope the large audience that tunes in to The Apprentice will learn a good deal about autism and the terrible toll it takes on families”.
December 15, 2005
Autism Speaks to Benefit from New GoSMILE Lemonade Smile Toothpaste
Essential oils of lemon deliver an uplifting sensory experience designed to encourage adequate brushing – for the recommended two minutes.
“Every day thousands of families affected by autism choose to make lemonade from lemons with their advocacy, commitment and action,” said Alison Singer, senior vice president of Autism Speaks, who met Shaw during a taping of The Apprentice.
“Autism Speaks is very fortunate to have advocates like Josh and the team at Go SMILE. This opportunity will not only raise vital funds to support autism research, but will also help shine a bright light on autism, which now affects 1 in 166 people.”
December 20, 2005
Winning Apprentice Contestants Raise Awareness, Funds for Autism Speaks
Millions of Apprentice viewers are now aware of the critical nature of the autism health crisis and the effect it is having on families,” said Alison Singer, senior vice president of Autism Speaks.
“The funds raised by Randal’s team, as well as the generous donation by Yahoo! and the strong donation response from viewers, will greatly aid our efforts to support critical research.”
December 22, 2005
Families of children with autism already bear a remarkable burden, so the work of AutismCares in alleviating the problems faced by families whose lives have been so deeply disrupted is especially crucial,” said Alison Singer, senior vice president of Autism Speaks, another AutismCares managing partner. “This remarkable coordinated effort will serve as an important model should the need for a similar mobilization arise again.”
2006
2006 (109th Congress)
Bills lobbied by: Autism Speaks
S.843 Combating Autism Act of 2006
H.R.5631 Department of Defense Appropriations Act, 2007
H.R.2421 Combating Autism Act of 2005
H.R.881 Mercury-Free Vaccines Act of 2005
S.1422 Mercury-Free Vaccines Act of 2005
H.R.5647 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2007
H.J.RES.100 Making further continuing appropriations for the fiscal year 2007, and for other purposes.
2006
Clients lobbying on S.843: Combating Autism Act of 2006
Bill sponsored by Rick Santorum (R-PA)
Autism Speaks, Wyeth, Cure Autism NOw American Occupational Therapy Assn, Entergy Corp, Sarnoff, United Cerebral Palsy Assn, University of Pittsburgh, University of Washingotn, Exxon Mobil, IKON Public Affairs, Jefferson Regional Medical Center, New England Center for Children (NECC), Autism Coalition for Research & Education (ACRE), AdvoServ Inc, Altoona-Blair County Developmetn Corp, American Academy of Pediatrics, Edison Electric Institute, Cure Autism Now,
2006
Autistic Self Advocacy Network (ASAN) is founded by Ari Ne’mean. This is Autistic-led organization. .
Board/Staff: Julia Bascom, Kayley Whalen, Meg Evans, Ben McGann, Hari Srinivasan, Zoe Gross, Sam Crane, Kelly Israel, Greg Robinson, Haley Outlaw, Ianthe Belisle Dempsey, Noor Pervez, Meredith Bartley, Reid Caplan, Jean Winegardner, Katherine Crater
January 17, 2006
Autism Speaks, a non-profit organization dedicated to increasing awareness about the growing autism health crisis and raising funds for critical autism research, today announced that its board of directors has voted to fund a program for the development of a national autism database.
Autism Speaks is making an initial three-year commitment to the project, beginning with an award of $2,266,000 for the first year. This is the first award of over a million dollars given out by Autism Speaks, which was founded in February 2005.
January 17, 2006
GoSMILE(tm) “lemonade smile” toothpaste is now on sale at prestige and specialty retailers nationwide, including Barneys New York, Bergdorf Goodman, Saks Fifth Avenue, Sephora, Ulta and Nordstrom.
“Every day thousands of families affected by autism choose to make lemonade from lemons with their advocacy, commitment and action,” said Alison Singer, senior vice president of Autism Speaks, who met Shaw during a taping of The Apprentice.
“Autism Speaks is very fortunate to have advocates like Josh and the team at Go SMILE. This opportunity will not only raise vital funds to support autism research, but will also help shine a bright light on autism, which now affects 1 in 166 people.”
January 18, 2006
Autism Speaks Co-founder Suzanne Wright appeared on ABC daytime talk show The View on Jan. 18.
February 6, 2006
New Advertising Council Campaign Focuses On Autism
The Advertising Council and Autism Speaks today announced a new three-year public service advertising (PSA) campaign in support of autism awareness. The campaign, which is being created pro bono by BBDO, will focus on raising awareness of autism and on the importance of early intervention. The campaign is scheduled to premiere in March, 2006, and will run across all media channels including print, broadcast, cable, radio and Internet.
Every 20 minutes another family receives the devastating news that their child has autism. One in 166 children is diagnosed with an autism spectrum disorder, with 1 in 104 boys affected – 4 times the number of boys than girls. This is a significant increase from just a decade ago, when 1 in 10,000 children were diagnosed.
“The goal of our campaign with the Ad Council will be to help people understand that autism is more common than they think” said Alison Singer, Senior Vice President of Autism Speaks.“We are grateful to the Ad Council for its commitment to improving overall awareness of autism, to breaking the stigma associated with autism, and to improving the outcomes for those who are or will be diagnosed by encouraging parents to seek early intervention services.”
February 13, 2006
Autism Speaks and the National Alliance for Autism Research (NAAR) Complete Merger
Unanimous Votes by Both Boards of Directors Combine Two of the Leading Research and Advocacy Organizations in the Fight Against the Nation’s Fastest Growing Serious Developmental Disorder
February 16, 2006
Alan Greenspan “Bullish” on Autism Speaks
Retired Federal Reserve Chairman Alan Greenspan today stated his support for Autism Speaks and its work on behalf of individuals and families affected by autism. A statement from Greenspan was read live this morning during a segment on CNBC’s “Squawk Box” that featured the winning bidders of a unique eBay auction of a painting of the former Fed chairman.
Matthew and Nathan Schirmer, who bid $150,400 for the portrait, were joined live on the program by portrait artist Erin Crowe and Autism Speaks Senior Vice President Alison Tepper Singer. Crowe painted the portrait live on CNBC three weeks ago.
“We are thrilled that Chairman Greenspan is so bullish on autism research and Autism Speaks,” said Singer. “We hope his comments result in a huge influx of capital.”
The Schirmers stated that they decided to make their identities public to help raise awareness of the growing autism epidemic. One in 166 children, including one in every 104 boys, is now diagnosed with an autism spectrum disorder.
February 23, 2006
Dennis Miller Headlines a Night of Comedy to Benefit Autism Speaks
Emmy award-winning comedian Dennis Miller announced today that he will headline a benefit comedy night to raise funds for Autism Speaks.
We’re incredibly grateful to Dennis for his commitment to helping families affected by autism,” said Suzanne Wright, co-founder of Autism Speaks. “Autism is a national health crisis that demands a greater level of public awareness and increased funding for the scientific research that will ultimately give us the answers to our many questions about this disorder. Dennis’ efforts are helping us to spread that critical message.”
March 1, 2006
Combating Autism Act:
March 3, 2006
Autism Speaks: The Washington Report: An Inside Look At Autism Speaks Advocacy In The Nation’s Capitol
Autism Speaks co-founders Bob and Suzanne Wright, their daughter Katie Wright, Deirdre Imus, founder of the Environmental Center for Pediatric Oncology, and Cure Autism Now board members Elizabeth Emken and Craig Snyder met with Senate leaders Bill Frist (R-TN), Michael Enzi (R-WY), Rick Santorum (R-PA) and Christopher Dodd(D-CT) on Wednesday, March 1, to discuss the Children’s Health Act of 2000 and to lobby for the Combating Autism Act in the Senate.
Later that day Majority Leader Frist addressed the issue of autism on the floor of the Senate.
Meanwhile, the Combating Autism Act has recently gained six new sponsors.
As of March 2, the bill has a total of 93 supporters in the House of Representatives, including 26 Republicans, 66 Democrats and one Independent.
There are a total of 24 supporters of the Senate bill, including 6 Republicans, 17 Democrats and one Independent
March 7, 2006
Autism Speaks: The Bidding Continues as “Project Runway” Fans Vie to Win a One-of-a-Kind Autographed Portfolio
Proceeds to Help Increase Awareness About Autism and Fund Critical Scientific Research
March 10, 2006
Autism Speaks: Washington Report Archive
An Inside Look at Autism Speaks Advocacy in the Nation’s Capitol
Since last week’s visit to Washington D.C. by the Wrights, Deirdre Imus, and CAN board members, the Combating Autism Act (S. 843) has gained an additional Senate cosponsor – Senator Chuck Schumer (D-NY) – bringing the total number of Senators supporting the bill to 25.The House version of the bill (H.R. 2421) has gained three additional cosponsors – Rep. Shelley Moore Capito (R-WV-2), Rep. Gregory W. Meeks (D-NY-6), and Rep. Gwen Moore (D-WI-4) – bringing the total number of House supporters to 96.
March 10, 2006
Supersmile to Donate a Percentage of its Sales to Autism Speaks …
“We remain committed to finding the best way to educate the public about autism, developing new treatments and finding a cure.” said Dr. Smigel. “We congratulate Autism Speaks and its cofounders, Bob and Suzanne Wright, for the wonderful strides the organization continues to make and are happy to do what we can to support their important efforts.”
March 17, 2006
Autism Speaks: Washington Report Archive
An Inside Look at Autism Speaks Advocacy in the Nation’s Capitol
During the past week, the Senate version of the Combating Autism Act (S. 843) gained a new cosponsor – Senator Bob Menendez (D-NJ) – bringing the total number of Senate supporters to 26.The House bill also gained a cosponsor – Representative Roy Blunt (R-MO-7) – bringing the total number of House supporters to 97. Both bills are supported by Republicans, Democrats, and Independents.
March 23, 2006
Autism Speaks Co-founder Bob Wright to Deliver Keynote Address …
The day’s festivities will also include a fundraising walk and silent auction. All proceeds will benefit Autism Speaks, Autism Cares and the Verbal Behavior Center for Autism (VBCA) in Fishers, IN.
VBCA is a not-for-profit center founded by a grassroots movement of parents with autistic children who saw only very limited options to treat their children. The VBCA provides therapeutic services to children and families impacted by autism by promoting Applied Behavior Analysis (ABA) principles and, specifically, verbal behavior therapy techniques.
March 24, 2006
Autism Speaks: Washington Report Archive
An Inside Look at Autism Speaks Advocacy in the Nation’s Capitol
In an effort to secure additional funding for autism research during Federal Fiscal Year 2007, Representatives Chris Smith (R-NJ), Mike Doyle (D-PA), and Carolyn McCarthy (D-NY) are circulating two letters among their House colleagues.One letter is directed to the House appropriations subcommittee with jurisdiction over Department of Defense (DoD) funding, and asks for $10 million to be dedicated to autism research through the DoD’s Congressionally Directed Medical Research Program.
The other letter is directed to the appropriations subcommittee with jurisdiction over the Department of Health and Human Services. That letter asks for a $5 million increase in funding for autism activities (surveillance, epidemiological research, and awareness) at the Centers for Disease Control and Prevention.
March 31, 2006
Autism Speaks and the CDC to Collaborate on Large-Scale Ad Council Awareness Campaign
Autism Speaks and the Centers for Disease Control and Prevention (CDC) today announced they will collaborate on Autism Speaks’ multi-year Ad Council public service advertising campaign and on the CDC’s “Learn the Signs. Act Early.” campaign. Both campaigns stress the importance of recognizing the early signs of autism and seeking early intervention services.
“Early diagnosis of autism is critical — kids who start receiving treatment early on can experience astounding results,” said Bob Wright, who co-founded Autism Speaks with his wife Suzanne in February 2005.
“CDC’s commitment to working with us on this initiative will bolster the efficacy of the Ad Council campaign in a significant way. Together, we will get this important message out to everyone who should hear it.”
April 7, 2006
On April 4, nearly 90 volunteers and staff of Autism Speaks went to visit their U.S. Representatives and Senators on Capitol Hill. They visited 40 Senate offices and 51 House offices to urge support of the Combating Autism Act.
On April 5th, Bob and Suzanne Wright, their daughter Katie, Deirdre Imus, and Autism Speaks board member Ann Gibbons joined Cure Autism Now co-founder and board member Jonathan Shestack and CAN board members Elizabeth Emken and Craig Snyder to meet with members of Congress to encourage their further support of the Combating Autism Act.
Senate Minority Leader Harry Reid (D-NV), Senator Hillary Clinton (D-NY), Senator Ted Kennedy (D-MA), Representative Mary Bono (R-CA), and Representative Diana DeGette (D-CO) thanked Autism Speaks for its efforts in promoting this important piece of legislation. (Reps. Bono and DeGette are the original sponsors of the House bill.)
Since these Hill visits, six additional House Members have already signed on as cosponsors of the Combating Autism Act, including the co-chairs of the congressional Coalition for Autism Research and Education – Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA). Other new cosponsors are Reps. Danny Davis (D-IL-7), Michael Michaud (D-ME-2), Solomon Ortiz (D-TX-27), and Fred Upton (R-MI-6). Thus, there are now a total of 28 Senate supporters and 104 House supporters from both sides of the aisle.
April 20, 2006
NBC News’ Stone Phillips will serve as master of ceremonies and New York City Schools Chancellor Joel I. Klein will be the special guest and keynote speaker at “A New Decade for Autism,” a special fundraising dinner benefiting Autism Speaks and The New York Center for Autism Charter School .
The New York Center for Autism’s mission is to serve as a state-of-the-art model for educating children with autism in the public school system and to advance related public policy initiatives.
The New York Center for Autism Charter School is New York State’s first charter school dedicated exclusively to educating children with autism.
April 28, 2006
Earlier this month, nearly 90 volunteers and staff of Autism Speaks visited their U.S. Representatives and Senators on Capitol Hill.Since these constituent visits, 18 additional House Members have signed on as cosponsors of the Combating Autism Act, including the co-chairs of the congressional Coalition for Autism Research and Education – Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA); the Ranking Member of the Health Subcommittee of the Energy & Commerce Committee (which has jurisdiction over the bill) – Rep. Sherrod Brown (D-OH); and the Vice-Chair of the full committee – Rep. Michael Bilirakis (R-FL). As of April 27, there were a total of 116 Representatives supporting the bill (34 Republicans, 81 Democrats, and one Independent).
In the Senate, there are also new cosponsors – Senators Pete Domenici (R-NM) and Jeff Bingaman (D-NM).Senator Bingaman is on the Senate Committee on Health, Education, Labor and Pensions, which has jurisdiction over the bill. As of April 27, there were a total of 29 Senators supporting the bill (8 Republicans, 20 Democrats, and one Independent).
April 27, 2006
Announcement of Future Autism Speaks Funding Initiative
As part of its overall funding agenda, Autism Speaks is developing a funding supplement mechanism designed to further support all areas of research on autism spectrum disorders.
The purpose of the research supplement is to expand the scope of existing NIH and CDC-funded research projects. The additional funds should be used to enhance the scientific value of the overall endeavor.
May 5, 2006
The Combating Autism Act. Both the House and Senate versions of the Combating Autism Act (S. 843/H.R. 2421) have gained new cosponsors during the past week, bringing the total to 34 Senators and 119 House members.The new Senate cosponsors are Sens. Patty Murray (D-WA), Jack Reed(D-RI), John Sununu (R-NH), David Vitter (R-LA), and John McCain(R-AZ).
Senators Murray and Reed are both on the Health, Education, Labor and Pensions Committee, which has jurisdiction over the bill. In the House, the new cosponsors are Reps. Mike Ross (D-AR-4), Rick Renzi (R-AZ-1), and Gary Ackerman (D-NY-5). Representative Ross is a member of the Energy and Commerce Committee, which has jurisdiction over the bill in the House.
CDC Appropriations. Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), co-chairs of the Congressional Autism Caucus, have been circulating a letter among their House colleagues soliciting support for increased funding for autism surveillance, epidemiological research and awareness activities at the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention.Thirty-six House members ultimately signed on to the letter, asking the relevant appropriations subcommittee to increase funding for the NCBDDD’s autism activities by $5 million in FY 2007. The letter also requests subcommittee report language encouraging the National Institutes of Health to enhance its research into autism.
Department of Defense Appropriations. Reps. Smith and Doyle also circulated a letter among their House colleagues soliciting support for $10 million for autism research through the Department of Defense (DoD) in FY 2007.The DoD already funds biomedical research on a number of medical conditions. While autism research currently can be conducted with DoD’s general medical research funds, the $10 million allocation sought for FY 2007 would be dedicated solely to autism research.
Thirty-nine House Members signed on to this letter, which was directed to the relevant House appropriations subcommittee.
May 9, 2006
A 12-minute version of Autism Every Day was first produced for, and screened at, “A New Decade for Autism,” a fundraising event held in New York to benefit Autism Speaks and the New York Center for Autism Charter School.
The film was intended to be shown one time only, but was subsequently broadcast by Don Imus on his MSNBC and nationally syndicated radio programs. It quickly spread virally through the Internet, first among members of the autism community and then beyond, generating tens of thousands of views on various web sites and blogs.
The tremendous online popularity of the documentary led Autism Speaks to create the longer, 44-minute version of the film that included additional families.
May 12, 2006
The Combating Autism Act. The House version of the Combating Autism Act (H.R. 2421) recently gained two new cosponsors – Representatives Rick Larsen (D-WA-2) and Bill Pascrell, Jr. (D-NJ-8). This brings the total number of House supporters to 121, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).The Senate bill (S. 843) now has 34 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT).
May 16, 2006
Autism Speaks Public Service Campaign Ads to Be Featured at 11th Annual Nantucket Film Festival
“We’re so grateful to the Nantucket Film Festival for providing this unique forum to increase awareness about the growing prevalence of autism, “said Suzanne Wright, co-founder of Autism Speaks.
“Parents need to be aware of the early warning signs of autism and talk to their doctor as soon as possible if they suspect a developmental delay. Early intervention is our best weapon against autism.”
May 17, 2006
Autism Speaks and Grasp to Exchange “Articles of Understanding”
Autism Speaks and GRASP (the Global Regional Asperger Syndrome Partnership) will pen articles for each other’s web sites in an effort to create a substantive and mutually respectful dialogue about why they differ on using the word “cure” in relation to autism, the two organizations announced today. The articles, which will be written by Autism Speaks Senior Vice President Alison Tepper Singer and GRASP Executive Director Michael John Carley, will appear online later this spring and present the organizations’ differing viewpoints on this specific issue.
Autism Speaks, a non-profit organization dedicated to increasing awareness of autism and raising money to fund autism research, uses the term “cure” in its discussions about autism spectrum disorders while GRASP, the largest organization of adults diagnosed along the autism spectrum, does not.
May 19, 2006
Funding for Autism Research.Autism Speaks Board Member Ann Gibbons presented testimony before the Senate Appropriations Subcommittee on the Departments of Labor, Health and Human Services, and Education at a hearing on May 19.
Gibbons spoke about the negative effects on autism research that would result if funding for the National Institutes of Health is reduced, as proposed in President Bush’s budget.
Autism Speaks is advocating for enhanced autism research at the NIH and the Centers for Disease Control and Prevention, and for a new autism research program at the Department of Defense.
May 24, 2006
Department of Defense Appropriations Bill:
On Wednesday, May 24, several Autism Speaks volunteers from the Pittsburgh area traveled to Washington to enlist support for autism research funding through the Department of Defense.
May 25, 2007
Senator Rick Santorum to Serve as Honorary Chair of the 7th Annual Pittsburgh Walk …
Senator Santorum will cut the ribbon marking the start of the walk and will also address the thousands of walkers present to discuss ongoing efforts to pass the Combating Autism Act, critical legislation he introduced that is currently pending in Congress. His Pittsburgh office staff will also field a walk team to help raise funds for autism research.
“I am very pleased to be a part of this year’s Walk for Autism Research, being held in my hometown of Pittsburgh, and I am looking forward to raising money and awareness for this worthy cause,” said Senator Santorum.
May 26, 2006
Washington Report Archive
An Inside Look at Autism Speaks Advocacy in the Nation’s CapitolThe Combating Autism Act. The House version of the Combating Autism Act (H.R. 2421) gained another cosponsor this week – Representative Jerry Weller (R-IL-11). This brings the total number of House supporters to 126, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).
During the past week, Senator Robert Bennett (R-UT) joined as a cosponsor of the Senate bill (S. 843), which now has 35 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT).Department of Defense Appropriations Bill. On Wednesday, May 24, several Autism Speaks volunteers from the Pittsburgh area traveled to Washington to enlist support for autism research funding through the Department of Defense. The volunteers had very positive meetings with key staff members of Pittsburgh-area Representatives John Murtha (D-PA-12), Mike Doyle (D-PA-14), Melissa Hart (R-PA-4), and Tim Murphy(R-PA-18).
Representative Murtha is the Ranking Minority Member on the DoD appropriations subcommittee, which is responsible for developing the DoD funding bill. The DoD currently funds research on a variety of medical disorders, and Autism Speaks is working to $10 million allocated specifically for autism research in the FY 2007 DoD budget.
Representative Doyle is co-chair of the House autism caucus with colleague Representative Chris Smith (R-NJ). They were joined by Representative Carolyn McCarthy (D-NY) in soliciting their colleagues’ support for the $10 million request for DoD autism research funding. Thirty-nine House Members signed their letter of support to the DoD appropriations subcommittee.
June 9, 2006
The Combating Autism Act. During the past week, Senators Lincoln Chafee (R-RI), Bill Nelson (D-FL), and Jim Talent (R-MO), joined as cosponsors of the Senate bill (S. 843). The bill now has 38 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT).The House version of the bill (H.R. 2421) also gained new cosponsors – Representatives John Lewis (D-GA-5) and Richard Neal (D-MA-2). The House bill now has 128 supporters, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).
Department of Defense Appropriations Bill. The Department of Defense (DoD) funds research on a number of medical conditions. Autism Speaks and its volunteers have been working to get to $10 million allocated specifically for autism research in the FY 2007 DoD budget. On Wednesday, June 7, the House Defense Appropriations Subcommittee marked up its FY 2007 appropriations bill in a session closed to the public. Information on whether funding was allocated for autism research should be available next week.
CDC and NIH Appropriations. Autism Speaks has been advocating for an increase in $5 million for CDC’s autism surveillance, research and awareness activities, and for enhanced autism research at the NIH. (Congress does not specify funding levels for particular NIH research, but can express its support in the report accompanying the bill.)
On Wednesday, June 7, the House appropriations subcommittee that recommends funding levels for the CDC and NIH marked up its FY 2007 bill. The mark-up was closed to the public, however, and information on the bill and report language will not be available until next week.
June 16, 2006
The Washington Report: An Inside Look At Autism Speaks Advocacy In The Nation’s Capitol
Department of Defense Appropriations Bill. There is excellent news to report – the FY 2007 Department of Defense (DoD) Appropriations Bill, reported out of the House Appropriations Committee this week, includes $7.5 million for autism research.
The DoD already funds research on a number of other medical conditions, and Autism Speaks/NAAR and their volunteers have been working for several years to get dedicated DoD funding for autism research. The bill must still be approved by the full House and then reconciled with the Senate DoD appropriations bill, which has not yet been developed.
The Combating Autism Act. During the past week, Senator Ken Salazar (D-CO) joined as a cosponsor of the Senate bill (S. 843). Thus, the bill now has 39 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT).
The House version of the bill (H.R. 2421) gained three new cosponsors — Representatives Dan Boren (D-OK-2), Stephanie Herseth (D-SD-At-large), and Jon C. Porter (R-NV-3). Thus, the House bill now has 130 supporters, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).
CDC and NIH Appropriations. Autism Speaks has been advocating for an increase of $5 million for CDC’s autism surveillance, research and awareness activities in FY 2007, and for a 5% increase in overall funding for the National Institutes of Health (NIH). (Congress does not specify funding levels for particular NIH research topics, but can express its support in the report accompanying the bill.)
This week, the House Appropriations Committee reported out its version of the FY 2007 Labor, Health and Human Services Appropriations bill. For the CDC’s autism research, surveillance, and awareness activities, the bill provides a slight increase over last year’s level, for a total of $15.5 million (compared with $15.1 in FY 2006).
The House recommended that the $15.5 million be divided as follows: $12.8 million for surveillance and research, and $2.7 million for awareness activities. This compares to FY 2006 funding of approximately $12.6 million for autism surveillance and research, and $2.5 million for the awareness campaign.
For the NIH, the House bill cut overall funding by $300,000, as requested by the President.
Within the NIH, the subcommittee also followed the President’s proposed budget, providing $1.394 billion for the National Institute of Mental Health, a 0.48% decrease from FY 2006, and $1.257 billion for the National Institute on Child Health and Human Development, a 0.58% decrease from FY 2006. Accordingly, funding for autism research would decline from $102 million in FY 2006 to $101 million in FY 2007, if the House bill’s funding levels eventually become law.
The Senate has not yet taken action on appropriations for NIH or CDC. Final funding levels will be determined by a House-Senate conference committee, most likely after the November elections.
June 23, 2006
The Combating Autism Act. During the past week, Senator Tom Harkin(D-IA) joined as a cosponsor of the Senate bill (S. 843). Senator Harkin is a member of the committee that has jurisdiction over the bill (the Health, Education, Labor and Pensions Committee). He also holds the important position of Ranking Minority Member of the appropriations subcommittee that develops the annual spending bill to fund programs within the Department of Health and Human Services.
The Senate bill now has 40 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT). The House version of the bill (H.R. 2421) currently has 130 supporters, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).June 27, 2006
“We are incredibly grateful to Kellogg for helping us to reach millions of parents with this critically important information about the early signs of autism,“ said Suzanne Wright, co-founder of Autism Speaks.
“Parents need to be aware of these ‘red flags’ and talk to their doctor as soon as possible if they suspect a developmental delay. Early intervention is our best weapon against autism.”
Early intervention = ABA. This campaign was simply one piece of the marketing tsunami Autism Speaks launched to lobby support for legislation and build an army of parent advocate ‘warriors’ for the Combating Autism Act of 2006 and later state-by-state legislation.
June 30, 2006
Autism Speaks: Washington Report Archive
An Inside Look at Autism Speaks Advocacy in the Nation’s Capitol
State legislation. Not all the action is in Washington, D.C.! There have been two exciting legislative developments at the state level in the past 10 days.On June 20, the New York legislature approved a bill (A699-B) that would provide insurance parity for individuals with autism by prohibiting insurers from denying coverage for services based solely on a diagnosis of autism.
Currently, many health insurance plans in the state do not cover diagnosis and treatment of autism even though they cover treatment for similar neurobiological disorders. For purposes of this law, “autism” is defined as “a neurobiological condition that includes autism, Asperger syndrome, Rett’s syndrome, or pervasive developmental disorder.”
The bill was sponsored by Assemblywoman Audrey I. Pheffer (23rd Assembly District, Queens), and now awaits the Governor’s signature.
On June 23, Illinois Governor Rod Blagojevich signed a law (Public Act 094-0906) mandating that all state and local insurance plans, as well as private insurance plans offered by many employers, pay for the treatment of pervasive developmental disorders.
It also requires group health benefit plans to provide coverage for 20 additional outpatient visits for speech therapy than otherwise provided. The law takes effect immediately, and as plans are renewed over the course of the next year, the additional coverage will be included in the new policies. The measure (originally bill HB 4125) was sponsored by Rep. Mary Flowers (D-Chicago) and Sen. Susan Garrett (D-Highwood).
The Combating Autism Act. At this time, the Senate bill (S. 843) has 40 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT). The House version of the bill (H.R. 2421) currently has 130 supporters, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).
July 14, 2006
The Combating Autism Act. On Wednesday, the staff of the Senate Committee on Health, Education, Labor and Pensions released its re-draft of the Combating Autism Act (S. 843). The bill is expected to be considered by the committee in a “mark-up” on July 19. The bill would authorize spending of nearly $1 billion over five years for autism research, education and awareness; increase agency accountability for autism research expenditures; and establish new Centers of Excellence in Environmental Health, which would be charged with conducting research “related to a broad array of environmental factors that may have a possible role in autism spectrum disorders.”
The bill gained a new cosponsor this week, Senator Kay Bailey Hutchinson (R-TX), bringing the total number of Senate supporters to 41, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT).
The House version of the bill (H.R. 2421) gained two new cosponsors this week – Representatives Thomas Allen (D-ME-1) and Alcee Hastings(D-FL-23), bringing the total number of House supporters to 134, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).
July 20, 2006
Autism Speaks: Washington Report Archive
An Inside Look at Autism Speaks Advocacy in the Nation’s Capitol
The Combating Autism Act Approved by Senate Committee.
On Wednesday, the Senate Committee on Health, Education, Labor and Pensions unanimously approved the Combating Autism Act (S. 843), as it had been amended in negotiations prior to this mark-up. Thus, the next step for the bill is consideration by the full Senate, which is expected to occur in late July or early August. It is hoped that the House will take up the Senate-passed bill in September or October.
Autism Speaks supports this bill, which will significantly enhance autism research, surveillance and screening. Among other things, it would authorize spending of nearly $1 billion over five years for autism research; increase agency accountability for autism research expenditures; and establish new Centers of Excellence in Environmental Health, which would be charged with conducting research related to a broad array of environmental factors that may have a possible role in autism spectrum disorders.It is expected that language in the committee report accompanying the bill, and statements made in the Congressional Record when the bill is considered on the Senate Floor, will convey congressional intent that vaccines and their preservatives should be considered such environmental factors.
The House version of the bill (H.R. 2421) gained two new cosponsors this week – Representatives Jim McDermott, (D-WA-7) and Lee Terry (R-NE-2) – bringing the total number of House supporters to 136, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO). The Senate bill currently has 41 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT).
Arizona Approves $9.6 million for Autism Research, Services
The Arizona Legislature and Governor Janet Napolitano recently approved two separate measures bringing a total of $9.6 million to autism research and support servicesJuly 27, 2006
Department of Defense Appropriations Bill. As reported in June, the House of Representatives passed a FY 2007 Department of Defense (DoD) Appropriations bill that includes $7.5 million for autism research. The Senate version of the bill is not expected to include this funding, however, since it was not included in the Defense Appropriations bill reported out of committee last week. Therefore, advocates must work to get the House-Senate conference committee to include the House provision in its “conference report” (House-Senate compromise bill).Combating Autism Act. As indicated in last week’s update, an amended version of the Senate Combating Autism Act (S. 843) was approved by the Senate Committee on Health, Education, Labor and Pensions on July 19. Since then it has gained a new Senate cosponsor – Senator John Cornyn (R-TX) – for a total of 42 supporters, including original sponsors Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT). Given the bill’s broad bipartisan support in the Senate, it is hoped that Senate passage will be forthcoming.
The next step will be House consideration of the bill. Therefore, advocates must work hard to increase the number of cosponsors of the House bill (H.R. 2421), aiming for a majority of 218 Representatives. So far, there are 141 House supporters, including original sponsors Representatives Mary Bono (R-CA) and Diana DeGette (D-CO).
Five new cosponsors signed on since the last update – Representatives Daniel Lungren (R-CA-3), Charles Pickering (R-MS-3), Adam Putnam (R-FL-12), Jim Ramstad (R-MN-3), and David Scott (D-GA-13).
July 31, 2006
Jay Leno to Headline Special Benefit Concert for Autism Speaks
“It has been eye-opening to learn about the devastating impact of autism and the growing number of families being affected by this disorder,” said Leno.
“It’s hard to fathom that one in every 166 children is now being diagnosed with autism. I’m happy to support the important work that Autism Speaks is doing to make more people aware of autism and to fund the scientific research that will hopefully yield the answers so many families are searching for.”
Billi and Bernie Marcus are the event honorary chairs. Beverly and Jim Rogers, Meredith and Ralph Toddre, and Suzanne and Bob Wright are the event co-chairs.
August 2006
Town & Country: Autism’s Angels
Autism Speaks co-founders Bob and Suzanne Wright are profiled in an article in the August issue of Town and Country magazine entitled “Autism’s Angels.”
In the article, the Wrights discuss their reasons for founding Autism Speaks and the organization’s mission. The article looks at the work of a number of prominent autism advocates, including Autism Speaks board member Laura Slatkin and her husband Harry Slatkin, creators of the New York Center for Autism (NYCA) charter school, and Jim and Marilyn Simons, founders of the Simons Foundation & SFARI.
This article pushes ABA as the solution to autism.
This campaign was simply one piece of the marketing tsunami Autism Speaks launched to lobby support for legislation and build an army of parent advocate ‘warriors’ to support their agenda for Autistics.
August 4, 2006
Combating Autism Act. The Senate approved this landmark legislation on August 3. The bill, which now goes before the House of Representatives, would nearly double federal spending on autism.The bill was approved in the Senate by unanimous consent. In introducing the bill for consideration on the Senate floor, co-sponsors Sen. Rick Santorum (R-PA) and Sen. Christopher Dodd (D-CT) both thanked Autism Speaks co-founders Bob and Suzanne Wright for their tireless efforts in support of the legislation.
August 4, 2006
Autism Speaks Applauds Unanimous Approval of Combating Autism Act by United States Senate
Landmark Legislation Authorizing Nearly $1 Billion in Autism Funding Now Moves to the House of Representatives
The bill authorizes $900 million over the next five years to combat autism through research, screening, intervention and education efforts, almost doubling current federal spending on autism.
The bill was sponsored by Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT), who last night on the Senate floor publicly thanked Autism Speaks Co-founders Bob and Suzanne Wright for their tireless efforts on behalf of the legislation. It was unanimously approved by the Senate Committee on Health, Education, Labor and Pensions (HELP) on July 19, and has the support of all major autism groups.
By passing this landmark single-disease legislation, the Senate has recognized the plight of the thousands of families struggling every day with autism, and has acknowledged autism as a national health care crisis,” said Mr. Wright, co-founder of Autism Speaks and chairman and CEO of NBC Universal.
“We now must look to the House to pass the bill and get it to the President’s desk as soon as possible.”
Note: Autism is NOT a disease.
August 25, 2006
Florida Volunteers Visit with Defense Appropriations Subcommittee Chairman Bill Young about Autism Research Funding
The August congressional recess is actually a “district work period” for Members of Congress because it gives them a chance to spend time with constituents at home. Several Florida volunteers took advantage of this opportunity to have a personal meeting with Representative C. W. Bill Young (R-FL-10th) on August 22.As Chairman of the House Defense Appropriations Subcommittee, Mr. Young’s support was critical in getting $7.5 million allocated for autism research in the House version of the FY 2007 Defense Appropriations bill. This is the first time that the bill has designated funding for autism research, although the Department of Defense funds research on a number of other medical conditions, including Parkinson’s disease, juvenile diabetes, epilepsy, and breast, ovarian and prostate cancer.
Autism Speaks Regional Director for Central/West Florida, Jennifer Robinson, arranged the meeting so that she and several other constituents could thank Mr. Young for his support of autism research. They also urged him to work hard to preserve autism research funding in the final version of the bill, which must be negotiated “in conference” with the Senate. The Senate version of the bill does not include any funding for autism research.
Mr. Young was very receptive as constituents described, first hand, the difficulties faced by military families who have a child with autism, and the pressing need for research to determine the causes and prevention of autism and the most effective treatments for those affected.
September 5, 2006
Autism Speaks, First Signs, and Florida State University to Collaborate on Web-Based Autism Video Glossary
Sometimes text is not enough,” said Alison Singer, senior vice president of Autism Speaks.
“Our hope is that parents will use this tool to help them better understand behaviors they see in their children and to learn more about terms that have been used by doctors or educators so that they can be the best possible advocates for their children.”
“The goal of this project is to facilitate earlier diagnosis and intervention for children with autism,” said Nancy D. Wiseman, president of First Signs.
“Right now, early intervention is the best weapon we have against autism.”
September 6, 2006
Years of Advocacy Result in Legislation Creating First Department of Defense-Sponsored Medical Research Program for Autism
The bill now goes to the President for his signature. This newly-created Department of Defense research program will complement the autism research funding already sponsored by the National Institutes of Health
“This appropriation represents an historic moment for the autism community,” said Bob Wright, co-founder of Autism Speaks. “We are succeeding in getting our elected officials to recognize the scope of the autism epidemic and the need for more money to effectively fight this battle in the laboratory.”
“Our volunteers have worked tirelessly to ensure that their voices were heard on Capitol Hill,” said Ann Gibbons, a member of the Autism Speaks board of directors who has led the organization’s efforts on this issue. “We thank the members of Congress and their staff members who took the time to meet with us and listened to our urgent call for increased autism funding.”
September 7, 2006
The Washington Report: An Inside Look At Autism Speaks Advocacy In The Nation’s Capitol
Combating Autism Act. Autism Speaks and other groups continue to work toward passage this year of the Combating Autism Act. Toward that end, we are seeking additional cosponsors for the House version of the bill (H.R. 2421), which currently has 141 cosponsors.Autism Research Through the Department of Defense.
In recognition of the special challenges to military families who have a child with autism, the House of Representatives has included $7.5 million dedicated to autism research in the Defense Appropriations bill.The Senate version of the bill, however, does not include any funding for autism research. Within the next few weeks, a House-Senate “conference committee” will negotiate a final, compromise bill.
Senators Mike DeWine (R-OH) and Hillary Rodham Clinton (D-NY) have agreed to circulate a letter for signature by their Senate colleagues that will urge Senate Defense Appropriations Subcommittee Chairman Ted Stevens (R-AK) and Ranking Member Daniel Inouye (D-HI) to accept the House funding level for autism research. Senator DeWine agreed to circulate this letter after a visit to his staff from Toledo, Ohio, constituent Justin Boeker, grandfather of a child with autism, and Autism Speaks Board Member Ann Boeker Gibbons.
Representatives Chris Smith (R-NJ), Mike Doyle (D-PA), and Carolyn McCarthy (D-NY) are circulating a similar letter in the House, to be sent to House Defense Appropriations Subcommittee Chairman C. W. Bill Young (R-FL) and Ranking Member John Murtha (D-PA).
September 22, 2006
Combating Autism Act. Autism Speaks and other groups continue to work toward passage this year of the Combating Autism Act. Toward that end, we are seeking to get 218 Representatives (a majority of the House) to cosponsor the House version of the bill (H.R. 2421).
As of September 22, 2006, the bill had 189 cosponsors, so we need to get only 29 more.
Autism Research Through the Department of Defense. In recognition of the special challenges to military families who have a child with autism, the House of Representatives has included $7.5 million dedicated to autism research in the Defense Appropriations bill. The Senate version of the bill, however, does not include any funding for autism research. Within the next few weeks, a House-Senate “conference committee” will negotiate a final, compromise bill.
Senators Mike DeWine (R-OH) and Hillary Rodham Clinton (D-NY) circulated a letter for signature by their Senate colleagues to urge Senate Defense Appropriations Subcommittee Chairman Ted Stevens (R-AK) and Ranking Member Daniel Inouye (D-HI) to accept the House funding level for autism research. The letter was signed by a total of 18 Senators of both parties.
Representatives Chris Smith (R-NJ), Mike Doyle (D-PA), and Carolyn McCarthy (D-NY) circulated a similar letter in the House, which was sent to House Defense Appropriations Subcommittee Chairman C. W. Bill Young (R-FL) and Ranking Member John Murtha (D-PA). That letter was signed by 43 Representatives of both parties.
September 26, 2006
“Our volunteers have worked tirelessly to ensure that their voices were heard on Capitol Hill,” said Ann Gibbons, a member of the Autism Speaks board of directors who has led the organization’s efforts on this issue. “We thank the members of Congress and their staff members who took the time to meet with us and listened to our urgent call for increased autism funding.”
September 29, 2006
Autism Speaks: Autism Community Consensus Statement on the Combating Autism Act
The refusal of House Committee on Energy and Commerce Chairman Joe Barton to move the Combating Autism Act (S.843) from his committee and bring it to the floor for a vote prior to the pre-election recess is a devastating blow to people with autism and their families. However, the fight for this critical legislation continues.
In his unwillingness to act on a bill meticulously crafted over 18 months and unanimously passed by the United States Senate, Congressman Barton has decided to put politics before the welfare of our children. Hundreds of senators and congressmembers from both sides of the aisle have met with families impacted by autism, been moved by their plight and signed on in support of the Combating Autism Act.
Autism is an epidemic that now affects one in every 166 of our children, yet federal funding for autism remains woefully insufficient. The Combating Autism Act would have begun to address this inequity by authorizing $920 million over five years toward treatment and research into the causes – genetic, environmental or otherwise — of the country’s fastest-growing childhood developmental disorder.
The autism community will continue to fight for our children and families, putting pressure on our supporters in Congress to ensure that this legislation gets the full House vote it deserves.
Note: The ‘Autism Community’ is not the Autistic Community. Everytime you see a reference to the ‘autism community’ this is the community that excluded Autistics from being at the table and having a voice or leadership position in matters that pertain to us. The Autism Community is referring to the group of parents, parent-founded organizations and their followers – not Autistic people.
September 29, 2006
Combating Autism Act In Jeopardy.
The refusal of House Committee on Energy and Commerce Chairman Joe Barton (R-TX) to move the Combating Autism Act (S.843) from his committee and bring it to the floor for a vote prior to the pre-election recess is a devastating blow to people with autism and their families. However, the fight for this critical legislation continues
Autism Research Through the Department of Defense –GREAT NEWS.
A House-Senate conference committee has decided to include $7.5 million dedicated to autism research in the FY 2007 Defense appropriations bill. The bill should be heading to the President’s desk shortly. The conference committee accepted the full amount that the House had provided in its version of the bill. The Senate bill had not provided any funding for autism research.
Several Senators and Representatives should be thanked for their leadership, and many more for their support. Those who were most instrumental in getting this funding were Representatives C. W. “Bill” Young (R-FL), John Murtha (D-PA), Chris Smith (R-NJ), Mike Doyle (D-PA), and Carolyn Maloney (D-NY); and Senators Mike DeWine (R-OH), and Hillary Rodham Clinton (D-NY).The autism research funds will be distributed through an ongoing Department of Defense medical research program, which also funds research on a number of other medical conditions, including breast, prostate and ovarian cancer, juvenile diabetes, epilepsy, muscular dystrophy and Parkinson’s disease.
October 1, 2006
Rick Santorum Walks for Autism
October 12, 2006
Your Action Still Needed on the Combating Autism Act. Grassroots volunteers are continuing to work hard to save the Combating Autism Act.As reported last week, House Committee on Energy and Commerce Chairman Joe Barton (R-TX) refused to move the Senate-passed Combating Autism Act (S.843) from his committee prior to the pre-election congressional recess. Rep. Barton or House leadership could still bring the bill to the House Floor during the “lame-duck” session of Congress after the elections, but they need to keep hearing from their Republican colleagues and constituents.
Please call your own Representative, Chairman Barton, and House leadership to let them know how important this is to you
(If you have already done so, thank you! Please follow up with your own Representative to see if he or she has contacted Rep. Barton and House leaders. Capitol switchboard: 202-225-3121.)
October 19, 2006
Autism Speaks: The Washington Report: An Inside Look At Autism Speaks Advocacy In The Nation’s CapitolAutism families and the media demand action on the Combating Autism Act, pressuring Joe Barton to bring the bill to the floor.
Congressman Joe Barton (R-TX), Chair of the House Energy and Commerce Committee, has come under increasing pressure to allow the Combating Autism Act to move to the House Floor.
Both the House version of the bill (H.R. 2421) and the Senate-passed version (S. 843) have been referred to his committee. Autism Speaks has been pushing for the House to consider the Senate-passed version of the bill this year, but Barton has been an obstacle. (He wants his House-passed National Institutes of Health reauthorization bill to be approved by the Senate first.)
The best way to pressure Chairman Barton and House leaders is through their House colleagues. Please ask your Representative to contact Chairman Barton, Majority Leader John Boehner (R-OH), and Speaker Dennis Hastert (R-IL) about moving the Combating Autism Act this year. You can call through the Capitol switchboard at 202-225-3121.
If you have called already, please follow up to see if your Representative has contacted Barton, Boehner and Hastert.
You should also contact Chairman Barton, and House leaders yourself. You can reach all of them through the Capitol switchboard (202-225-3121).
November 3, 2006
Autism Speaks Selected to be H.O.S.A Service Project for the Next Two Years
In choosing to support the work of Autism Speaks, our students have selected a worthy and important cause,” said Dr. Jim Koeninger, HOSA Executive Director. “The scope of the autism health crisis in this country requires action on all fronts, and that includes the involvement of concerned, motivated student leaders.”
November 6, 2006
Autism Speaks Announces New Staff Appointments
Organization Names New National Director of Leadership Giving, National Director of Creative Services and Director of Communications: Richard Brown, Bill Shea & Dana Marnane.
Bill Shea has served as a consultant to Autism Speaks since the organization’s inception and has played a pivotal role in developing its multi-year campaign with the Ad Council. In his new role, he will expand the organization’s partnership with the Ad Council and will oversee the development of walk-related and other branded marketing materials.
“Bill’s considerable skills include an unmatched combination of creativity and strategic thinking,” said Alison Singer. “Our portfolio of awareness activities and events will certainly flourish under his watch.”
“Dana brings a unique combination of communications and retail experience to Autism Speaks,” said Singer. “She will be a great asset as we broaden our existing partnerships with major retailers and look to expand into new markets.”
November 13, 2006
Do the election results change the strategy for the CAA?
In short, no. Due to the autism community’s pressure on Chairman Barton, he is open to serious negotiations, which are ongoing. If a good bill can be achieved during the remainder of this Congress (which reconvenes on November 13), then the CAA could become law by 2007.
In any case, we will not settle for a bill that does not achieve the goals of the CAA (including provisions to ensure that federal research dollars are well-directed, with greater “consumer” input and agency accountability). If we cannot achieve the goals of the autism community this year, then our efforts to pass the CAA will recommence with the new Congress in January.
November 21, 2006
Autism Speaks Announces New Staff Structure for its National Walk Program
Organization Names New National Director of Field Operations, National Walk Director and Senior Regional Director–Mid West
“Part of Autism Speaks’ strategic plan is to be in every state with fundraising, awareness, advocacy and outreach. The Walks for Autism Research serve as the base for developing the grassroots support of the organization,” said Mark Roithmayr, president of Autism Speaks.
“With this new leadership structure, we will have three incredibly talented people directing our existing walk efforts and our ambitious expansion plans.”
November 29, 2006
Cure Autism Now and Autism Speaks Announce Plans to Combine Operations
Merger of Leading Autism Organizations Will Lead to Enhanced Research, Treatment and Advocacy Programs
“Autism Speaks and Cure Autism Now believe that a combined organization will attract more resources and facilitate large-scale research, while providing the funding necessary to launch planned clinical and quality-of-life programs. A single entity will foster collaboration among the best scientific minds and most dedicated advocates.
“This is how we will reach our common mission — finding a cure for autism,” said Peter Bell and Mark in a joint statement.
December 6, 2006
Bob and Suzanne Wright, co-founders of Autism Speaks, talk about the Combating Autism Act.
December 6, 2006
Landmark Legislation Authorizing Nearly $1 Billion in Autism Funding Now Moves Back to the Senate for Prompt Action
The bill authorizes nearly 1 billion dollars over the next five years to combat autism through research, screening, early detection and early intervention. The new legislation will increase federal spending on autism by at least 50 percent. It includes provisions relating to the diagnosis and treatment of persons with autism spectrum disorders, and expands and intensifies biomedical research on autism, including an essential focus on possible environmental causes. Autism is now diagnosed in 1 in 166 children according to the Centers for Disease Control.
“This bill is a federal declaration of war on the epidemic of autism,” said Jon Shestack, co-founder of Cure Autism Now.“It creates a congressionally mandated roadmap for a federal assault on autism, including requirements for strategic planning, budget transparency, Congressional oversight, and a substantial role for parents of children with autism in the federal decision-making process.”
“By passing this landmark single-disease legislation, the House has recognized the daily plight of the thousands of families struggling every day with autism, and has once and for all acknowledged autism as a national healthcare crisis,” said Bob Wright, co-founder of Autism Speaks and chairman and CEO of NBC Universal.
“We now must get the bill to the President’s desk as soon as possible.”
December 7, 2006
The passage of this landmark single-disease legislation signals the federal government’s declaration of war on the epidemic of autism,” said Jon Shestack, co-founder of Cure Autism Nowand Bob Wright, co-founder of Autism Speaks and chairman and CEO of NBC Universal in a joint statement.
“ Seeing this bill become law will be the next best thing to finding a cure.”
The Senate bill was sponsored by Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT). The bill has the support of all major autism advocacy groups. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
December 7, 2006
Imus Talks About Bos & Suzanne Wright, and the Combating Autism Act
December 11, 2006
Rick Santorum on Combating Autism Act
December 20, 2006
Autism Speaks and Cure Autism Now Applaud Presidential Signing of the Combating Autism Act
Landmark Legislation Authorizes Nearly $1 Billion in Autism Funding
The bill – which has the support of all major autism advocacy groups — authorizes nearly $1 billion over the next five years to combat autism through research, screening, early detection and early intervention.
The new legislation will increase federal spending on autism by at least fifty percent. It includes provisions relating to the diagnosis and treatment of persons with Autism Spectrum Disorders, and expands and intensifies biomedical research on autism, including an essential focus on possible environmental causes. Autism is now diagnosed in 1 in 166 children, according to the Centers for Disease Control.
“The Combating Autism Act represents a critical and hard-fought victory for the autism community, and yet much of the toughest work is still to come during next year’s appropriations process,” said Bob Wright, co-founder of Autism Speaks and Chairman and CEO of NBC Universal. “We must continue to be collaborative and relentless in our efforts to ensure that this historic commitment is fulfilled.”
“The campaign to enact the Combating Autism Act worked because it was bipartisan in the truest sense of the word, as our political leaders put the interests of individuals and families impacted by autism above all else,” said Jon Shestack, co-founder of Cure Autism Now.
“As the prevalence of autism grows, the odds are that every American will know a family who will directly benefit from the programs and research made possible by this legislation.”
2007
2007 (110th Congress)
Lobbied by: Autism Speaks
S. 937 – Expanding the Promise for Individuals with Autism Act of 2007
H.R. 1881 – Expanding the Promise for Individuals with Autism Act of 2007 H.R. 2609 – Empowering Children with Autism through Education Act of 2007 H.R. 2390 – TEACH Act of 2007
S. 937 – Expanding the Promise for Individuals With Autism Act of 2007
H.R. 1881 – Expanding the Promise for Individuals With Autism Act of 2007 H.R. 2609 – Empowering Children with Autism through Education Act of 2007 H.R. 2390 – TEACH Act of 2007
S.1710 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2008
H.CON.RES.99 Revising the congressional budget for the United States Government for fiscal year 2007, establishing the congressional budget for the United States Government for fiscal year 2008, and setting forth appropriate budgetary levels for fiscal years 2009 through 2012.
H.J.RES.72 Making further continuing appropriations for the fiscal year 2008, and for other purposes.
H.J.RES.69 Making further continuing appropriations for the fiscal year 2008, and for other purposes.
S.2009 A bill to authorize additional funds for emergency repairs and reconstruction of the Interstate I-35 bridge located in Minneapolis, Minnesota, that collapsed on August 1, 2007, to waive the $100,000,000 limitation on emergency relief funds for those emergency repairs and reconstruction, and for other purposes.
H.J.RES.20 Revised Continuing Appropriations Resolution, 2007
S.CON.RES.21 An original concurrent resolution setting forth the congressional budget for the United States Government for fiscal year 2008 and including the appropriate budgetary levels for fiscal years 2007 and 2009 through 2012.
January 2, 2007
Autism Speaks: “Autism Every Day, a documentary that takes viewers inside the lives of families struggling to raise children with autism, has been selected by the Sundance Institute as a special screening film at the 2007 Sundance Film Festival. “
The film was directed by Lauren Thierry of the October Group and co-produced by Ms. Thierry and Eric Solomon of Milestone Video. Funding for the film was provided by Autism Speaks.
Autism Speaks co-founders Bob and Suzanne Wright served as executive producers of the film. Autism Speaks Senior Vice President Alison Singer served as Executive in Charge of Production.
January 16, 2007
Autism Speaks: The ‘Pin is In’ at the Golden Globes as Stars from Heroes, 30 Rock, The Office and Others Show Their Support for Autism Speaks
January 26, 2007
Autism Speaks: Tune-in Alert: Autism Every Day Featured During Monday’s Hour-long Exporation of Autism on ABC’s The View
Autism Every Day, the powerful, new documentary produced by Autism Speaks, will be featured in a special hour-long exploration of autism on the popular daytime program “The View.”
The hour, airing Monday at 11:00 AM ET on the ABC Television Network, will include interviews with medical experts, individuals with autism and their families. It features Rosie O’Donnell, Joy Behar, Elisabeth Hasselbeck and special guest co-host Toni Braxton, the Grammy Award-winning singer/songwriter who is also the mother of a son with autism.
January 30, 2007
Bill Cosby and Toni Braxton Headline Concert for Autism Speaks
We are incredibly grateful to Bill and Toni for lending their remarkable talents to us for what promises to be a memorable evening,” said Suzanne Wright, co-founder of Autism Speaks.
“With the recent passage of the Combating Autism Act, the future is far brighter for every individual and family affected by autism. However, the need to raise funds for awareness, treatment and research is as urgent as ever.”
Early intervention & autism treatment = ABA. This campaign was simply one piece of the marketing tsunami Autism Speaks launched to lobby support for legislation and build an army of parent advocate ‘warriors’ for the Combating Autism Act of 2006and later state-by-state legislation.
February 5, 2007
February 6, 2007
Toys “R” Us Announces National Partnership with Autism Speaks
Toys “R” Us announced its support of Autism Speaks in its commitment to fund research that will help uncover the causes of, develop effective treatments for and ultimately find a cure for autism.
February 8, 2007
Autism Speaks: Prevalence of Autism Now 1 in 150, According to New CDC Report
Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks’ Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute, said, “These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism — potential causes, better treatments and, hopefully, a cure — must become that much more urgent today.”
Note: Autism Speaks uses the CDC prevalence studies to fan fear and promote the ’autism epidemic’ that didn’t exist.
February 13, 2007
March 7, 2007
Autism Speaks: Broadway Stars Help Create A Piece of the Puzzle for Autism
The auction block includes 21 unique puzzle pieces signed and decorated by Broadway’s best for the annual Kids’ Night on Broadway event which, this year, helped shine a spotlight on the growing prevalence of autism and the work of Autism Speaks.
March 7, 2007
Toni Braxton Named National Celebrity Spokesperson for Autism Speaks
“I became determined to join Autism Speaks in its battle against this devastating disorder when autism became a part of my family’s reality,” said Braxton, who is currently headlining in a long-term engagement at the Flamingo Hotel in Las Vegas.
Added Braxton: “Autism Speaks is making remarkable strides on so many fronts, from dramatically increasing awareness about autism to effectively fighting for more government resources for families and researchers. I feel privileged to have the opportunity to help advance this cause in any way I possibly can.”
March 8, 2007
Autism Speaks Announces Autism Awareness Month Initiatives and Special Events
April will mark the launch of the second phase of Autism Speaks’ successful public service advertising (PSA) campaign, produced in conjunction with the Ad Council and the Centers for Disease Control,and created pro bono by BBDO Worldwide.
The first round of ads garnered over $30 million in donated advertising in only six months, twice the Ad Council average. The new ads – which will appear on television and radio, in print and online beginning in April – will build on the original theme that autism is more common than most people think and will urge all parents to learn the signs of autism. Click here for the “Learn the Signs” page.
March 13, 2007
“With the Centers for Disease Control and Prevention recently releasing revised statistics that the prevalence of autism has increased to one in 150 children, this campaign could not come at a more crucial time,” said Suzanne Wright, co-founder of Autism Speaks. “We are extremely grateful to Toys “R” Us for its help in raising much-needed funds and generating awareness for this disorder that affects so many families.”
March 21, 2007
Tune-in: Suzanne Wright on CNN’s Larry King Live (transcript included)
Autism Speaks Co-founder Suzanne Wright appeared this week on CNN’s “Larry King Live” to discuss autism.
Wright appeared along with Bill Cosby and Toni Braxton, the stars of the upcoming Concert for Autism Speaks on April 9 at Jazz at Lincoln Center in New York City.
Braxton was recently named national celebrity spokesperson for Autism Speaks.
BRAXTON: Much better. We had — because we were able to diagnose, we knew what the problem was and we could get him all the help that he needs.
KING: What kind of treatment?
BRAXTON: Oh, gosh, he’s in ABA, O.T. speech behavior, everything. He has like almost 80 hours a week therapy with different therapists.
The show originally aired on Wed., March 21, 2007 and aired again on Sun., March 25.
March 22, 2007
Discover Magazine: Autism: It’s Not Just in the Head
The devastating derangements of autism also show up in the gut and in the immune system. That unexpected discovery is sparking new treatments that target the body in addition to the brain.
by Jill Neimark
STATEMENT OF MARGUERITE COLSTON, DIRECTOR OF COMMUNICATIONS, AUTISM SOCIETY OF AMERICA, BETHESDA, MARYLAND (April 17, 2007)
Note: This article was used in the 2007 Autism Treatment & Research Trial in the United States.
This magazine was about to go under when Bob Wright bailed them out, got this article printed (placed by Autism Society with the help of Martha Herbert), bought all copies and distributed them himself. This article was referred to during this hearing about funding the Combating Autism Act of 2006.
There’s a lot of quackery, ableism, stigma, conjecture, myth, tragedy narrative and outright bullshit included. This is propaganda to influence the public, legislators, parents and more to push for insurance to cover ABA.
April 6, 2007
Autism Speaks Public Service Announcements Debut in Regal Cinemas
Beginning today and running through April 12, Regal Entertainment Group will run a thirty-second public service ad produced by the Ad Council — part of the Ad Council’s multi-year campaign with Autism Speaks — before every film shown on its 6,386 screens in honor of Autism Awareness Month.
“This partnership with Regal Entertainment Group is an exciting opportunity to bring our message of autism awareness to a new and very large audience,” said Suzanne Wright, co-founder of Autism Speaks.
“Thanks to Regal Entertainment Group, thousands of movie-goers will learn about the scope of the autism health crisis and the importance of early detection and intervention.”
Early detection & intervention = Early & More ABA
April 10, 2007
Autism Speaks‘ Executive Vice President Peter Bell will serve as Chair of the Integration Panel of the Department of Defense FY07 Autism Spectrum Disorder Research Program. The announcement was made at the first meeting of the panel last week.
What’s unique about the ASDRP is that it will actively include the consumer advocates to make its funding decisions” said Bell. “Our goal is to fund innovative research that will provide hope and lead to a cure for autism as rapidly as possible.”
Other members of the panel include Dr. Gary Goldstein, Kennedy Krieger Institute – Alternate Chair; Dr. Linda Brzustowicz, Rutgers University; Dr. Stephen Dagar, University of Washington; Dr. Emanuel DiCicco-Bloom, UMDNJ Robert Wood Johnson Medical School; Mr. Lee Grossman, Autism Society of America; Dr. Susan Hyman, University of Rochester; Dr. Alice Kau, National Institute of Child Health and Human Development; Ms. Lyn Redwood, NAA/SafeMinds; Ms. Shelley Hendrix Reynolds, Unlocking Autism; and Dr. Carole Samango-Sprouse, George Washington University.
April 17, 2007
Executive Committee Member Jon Shestack and Actor/advocate Bradley Whitford Speak in Support of Expanding the Promise for Individuals with Autism Act (EPIAA)
“I want to commend our government leaders for championing legislation that finally offers a lifeline to the many families struggling with autism who are desperately trying to keep their families afloat,” said Whitford. “I have watched the rate of autism diagnosis grow from 1 in 2500 to 1 in 150, according to the latest CDC figures. We must act now.”
April 11, 2007
Autism Society of America: Calls for Collaborative Response to Crisis in Autism Services and Supports
APRIL 17, 2007
Autism Treatment and Research Hearing
Witnesses testified about the prevalence of autism and policy implications for health care in the U.S. Among the topics they addressed were combating autism, available treatments, research into the disease, and coordinating a federal response to the problem.
View Original Testimony Video : https://www.c-span.org/video/?197628-1/autism-treatment-research
April 17, 2007
Autism Treatment & Research Hearing: Statement of Bob Wright Co-Founder of Autism Speaks
“One of the things I would offer as a comment here, that–
Bob Wright
this is something we do know, that a child that does early
intervention, is diagnosed before 3 years old, and is fortunate
enough to have active therapy such as behavioral, occupational,
or speech therapy, has a 50 percent chance of being able to
matriculate to a public school. If you don’t do that, you have
almost no chance.”
April 17, 2007
“Then there are the cases which don’t make national news,
but which echo loudly among people in the autistic community.
About once a month, somewhere in America, the father of an
autistic child kills the child, and himself, to end the
despair. (Note: he means the ‘autism community’)Yet, despite all of this, there is some genuinely good
news. The unanimous passage at the end of last year of the
Combating Autism Act by both Houses of Congress can be an
historic turning point. The act contains, for the first time,
specific authorizations of appropriations to combat a single
disease, including bio-medical research, public awareness, and
consolidation and coordination of Federal efforts to ensure the
early diagnosis of kids with autism, so they can get–when it
matters most–the interventions that can give them the best
possible quality of life.” – Bradley WhitfordBradley Whitford, a non-Autistic actor who has a friend with an autistic child, testifies to senators at the Autism Treatment & Research Hearing in 2007.
April 17, 2007
United States Autism Treatment & Research Hearing: Statement by Dr. Thomas R. Insel
“There are treatments that work–they don’t work for all children. Perhaps 25 to 30 percent of children respond beautifully to behavioral
interventions, but they respond best with early detection and
early intervention, particularly before age 3.” – Tom Insel
From this testimony, what Dr. Insel is really saying is: ABA has a failure rate of 70 – 75%.
Yes, the Director of NIMH stated ABA’s fail rate as a ‘success.’ So, by Insel’s statement, ABA doesn’t work for MOST Autistic children.
In fact, ABA is a very controversial ‘therapy’ being pushed as the great savior. ABA with non-Autistic children would be considered child abuse. Yet there’s no conversation here about putting Autistic toddlers and young children in 40-hours a week of ABA. The absurdity of putting a baby through essentially a full-work week in an attempt to re-wire their brain isn’t mentioned. Nor is there any conversations about the outcome for Autistic children who weren’t re-wired successfully with their therapy or their outcomes.
April 18, 2007
Bill Mandates That Private Insurers Provide Coverage for Early Intervention Services and Therapies for Individuals with Autism“This legislation will go a long way towards ensuring that kids get the early intervention services they need to give them the best possible quality of life,” added Jon Shestack.
“Our goal is to make what’s happening here in Pennsylvania a blueprint for action in every state in America.”
April 2007
Autism Speaks: Autism Insurance Bill
Read the full text of the legislation here:
House Legislation: H.R. 1881
Senate Legislation: S. 937Bill Summary Description
- The EPIAA will authorize approximately $350 million in new federal money – over and above all existing federal spending on autism – for important initiatives related to treatments, interventions, and services for both children and adults with autism.
- More specifically, the EPIAA authorizes –
- The creation of a task force (with not less than 1/3 autism community* membership) to report to Congress and the Executive Branch on the state of evidence-based biomedical and behavioral treatments and services for both children and adults with autism, including identifying gaps in applied research on such treatments, interventions and services.
- Demonstration grants for the coverage of treatments, interventions and services ($20 million annually).
- Planning and demonstration grants for services for adults with autism ($20 million annually).
- Grants for the expansion of access to immediate post-diagnosis care ($10 million in Fiscal Year 2009, growing to $20 million by Fiscal Year 2012).
- National training grants for the University Centers of Excellence for Developmental Disabilities for training, technical assistance and additional services for individuals with autism and their families ($13.4 million annually).
- A Government Accountability Office (GAO) study on service provision and financing.
- Grants to protection and advocacy systems to better meet the needs of families facing autism and other developmental disabilities, including legal representation ($6 million annually).
Autism Community Membership = Parents of Autistics, not Autistics themselves.
April 26, 2007
Ad Council, Autism Speaks Launch New PSAs to Raise Awareness of Autism
Early diagnosis of autism is critical — kids who start receiving treatment early can experience astounding results,” said Alison Singer, executive vice president for communications and awareness at Autism Speaks.
“Together, we will continue to get this important message out to everyone who should hear it.”
The ads also communicate to parents “you know the odds of autism, now learn the signs”. Viewers are directed to visit www.autismspeaks.org to learn the signs of autism and to find out about early intervention.
The new television, radio, print, and web banner PSAs are being distributed to over 28,000 media outlets nationwide this week. Per the Ad Council model, the PSAs will run and air in advertising time and space that is donated by the media.
May 2007
Katie Wright Talks About Ineffectiveness of ABA
“The Lovaas (ABA) that was frequently quoted to me. … if you could just good early intervention, which everybody is for, and we got for him, …there’s a 50% chance he’ll be a typical child in 5 years.
So that sounded like good odds. Little did I know that’s never been replicated. … and, you know, didn’t include kids like Christian.”— Katie Wright, daughter of Autism Speaks founders, Bob and Suzanne Wright.
May 17, 2007
“We are thrilled with the results of the Toys “R” Us in-store fundraising campaign, which far exceeded our expectations,” said Mark Roithmayr, President of Autism Speaks. “Toys “R” Us has been a tremendous partner and because of its dedication to this campaign we are one step closer to finding a cure for autism.”
May 18, 2007
Thanks to Visa’s commitment, this event marks the first time a NASCAR NEXTEL Cup event entitlement has been dedicated to a not-for-profit organization,” said Mark Rossi, vice president of sales & marketing for Dover Motorsports, Inc.
“Millions of fans watching the race on Fox around the country, along with our loyal fan base here at the track in Dover, will be exposed to the ‘Autism Speaks 400 presented by Visa’ messaging. The end result will be increased awareness, and additional funds, to assist the many important initiatives of Autism Speaks.”
June 15, 2007
June 29, 2007
Autism Speaks Approves More Than $15 Million in New Research Grants
Autism Speaks today announced that it has approved $15.2 million in funding for 52 new research grants, spanning a wide range of topics to improve our understanding of the risk factors for autism, its underlying mechanisms, and how a disorder that now affects one in every 150 children might be more effectively treated and prevented.
July 17, 2007
The bill (HB 1150), introduced by the Speaker, would create a new “Autism Spectrum Disorders Coverage” provision of the Pennsylvania insurance law.
This provision would require private insurers to provide coverage of up to $36,000 annually for essential treatments for individuals with autism, such as Applied Behavioral Analysis (ABA), and other structured behavioral programs.
Most states do not require private insurance companies to cover even essential autism treatments and services.
In the absence of coverage, families often pay as much as they can out-of-pocket for Applied Behavioral Analysis services, and other structured behavioral programs, that can cost upwards of $50,000 per year, often risking their homes and the educations of their unaffected children – essentially mortgaging their entire futures.
Coverage for these treatments will add less than 1 percent to the cost of an annual policy.
July 25, 2007
Starbucks Now Serving Autism Speaks’ Freshly Brewed Thought of the Day
Autism Speaks has given Starbucks customers something to think about today as co-founder Bob Wright’s reflections appear on Starbucks white cups across North America as part of “The Way I See It” program.
The cup says: Every 20 minutes-less time than it will take you to drink your coffee-another child is diagnosed with autism. It’s much more common than people think, with 1 out of every 150 children diagnosed. Learn the early warning signs of autism and if you’re concerned about your child’s development, talk to your doctor. Early intervention could make a big difference in your child’s future. – Bob Wright, Co-founder, Autism Speaks,
September 10, 2007
Autism Speaks Previews Fall 2007 Initiatives and Events
Launch of Web-based Autism Video Glossary, YouTube and TiVo Channels and 100 Day Kit Among Highlights
Autism Speaks Channel on TiVo
Autism Speaks, together with First Signs and Florida State University, will launch a web-based video glossary to help parents learn more about the early warning signs of autism. autism. … Video clips will also give parents short windows into the different types of therapies available for children with autism.
Autism Speaks and TiVo have partnered to create an Autism Speaks channel, which will feature a variety of video content provided by Autism Speaks, including the acclaimed Autism Speaks-produced documentary Autism Every Day and Autism Speaks’ public service advertisements produced in conjunction with the Ad Council.September 13, 2007
“Autism Speaks is committed to finding new and innovative ways to share ideas, information and experiences within the autism community,” said Bob Wright, Autism Speaks co-founder. “By harnessing the tremendous power of YouTube as a destination for information and entertainment, AutismSpeaksVids promises to be an effective tool for achieving this important goal.”
Note: The ’autism community’ is not the Autistic Community.
October 1, 2007
Autism Speaks: U.S. Supreme Court Hears Case Regarding Parents’ Rights in IEP Process
The Autism Speaks Federal Legal Appeals Project is a national pro bono initiative assembled and directed by Mayerson for Autism Speaks. To date, approximately ten national profile law firms, including Akin Gump Strauss Hauer & Feld, have joined the FLAP committee with commitments to provide significant pro bono legal services at the federal level. Akin Gump attorneys Robert H. Pees, Michael D. Lockard, Amanda R. Johnson, Sunish Gulati and Evandro C. Gigante prepared the amicus brief in the Tom F case.
October 2, 2007
Representative Chris Smith Calls for the Passage of The Combating Autism Act
October 2, 2007
Sundance Channel to Acquire Broadcast Rights to Acclaimed Autism Speaks Documentary Autism Every Day
Sundance Channel to Acquire Broadcast Rights to Acclaimed Autism Speaks Documentary Autism Every Day
Film Will Have Its National Television Premiere During Autism Awareness Month in April 2008
Autism Every Day is a truthful, unvarnished portrayal of the 24-hour-a-day challenges faced by families as they confront the heartbreak of autism with uncompromising hope and unconditional love. The film premiered to packed theaters and both popular and critical acclaim at the 2007 Sundance Film Festival last January. It has been screened at additional film festivals across the country and featured on “The Oprah Winfrey Show,” “Good Morning America” and “Larry King Live.”
Autism Every Day was directed by Lauren Thierry of the October Group and co-produced by Ms. Thierry and Eric Solomon of Milestone Video. Funding for the film was provided by Autism Speaks. Autism Speaks Co-founders Bob and Suzanne Wright are the executive producers.“We are enormously grateful to the families who let us into their homes, their lives, and simply let our cameras roll, allowing us to show their tremendous strength, dignity — even humor — in the face of incredible adversity,” said Thierry. “Their unyielding love for their children made this film possible.”
“We made Autism Every Day because we wanted to provide a window into the day-to-day realities of autism,” said Bob Wright, co-founder of Autism Speaks. “This agreement with the Sundance Channel provides us with an important opportunity to reach new audiences with our autism awareness message.”
Autism Speaks Senior Vice President Alison Singer served as Executive in Charge of Production.
October 9, 2007
A Special One-Night-Only Performance by Music Star Seal to Benefit Autism Speak
“The passion and heart that is the trademark of Seal’s award-winning music clearly goes way beyond his musical talent,” said Alison Singer, Executive Vice President of Autism Speaks.
“We cannot express our gratitude enough to Seal, NBC, and Disson Skating, not only for helping us raise vital funds to support autism research, but also for shining a bright light on the autism epidemic that now affects 1 in 150 people.”
October 15, 2007
“The goal of this initiative is to facilitate earlier diagnosis and intervention for children with autism,” said Nancy D. Wiseman, founder and president of First Signs. “Right now, early intervention is the best weapon we have against autism. We want parents to be able to recognize those early warning signs and communicate their concerns more effectively with their pediatrician.”
October 31, 2007
Autism Speaks Applauds New American Academy of Pediatrics Guidelines for Autism
Organization Praises AAP Report Recommending Early Autism Screening of All Children, Calls for Insurance Companies to Provide Full Medical Coverage for Autism Treatments
The AAP now recommends that all children be screened for autism spectrum disorder twice before age 2 — once at 18 months and once at 24 months — as part of well baby checkups. Further, it recommends that treatment for autism be started when autism spectrum disorder is suspected, rather than when a formal diagnosis is made.
The new policies replace AAP guidelines on ASD released in 2001. According to the AAP, the change is due primarily to evidence showing that a reasonably reliable diagnosis can be made at 18-24 months, a finding based on research from the Autism Speaks-funded Baby Siblings Research Consortium.
“The next big step is to fight for insurance coverage for autism treatments,” said Bob Wright during an appearance on NBC’s Today Show. “Behavioral treatments are a critical part of the medical management of autism. Behavioral interventions, such as Applied Behavior Analysis, and other structured behavioral programs, need to be recognized as medically necessary services and paid for by private health insurance.” –
Autism Speaks is currently involved in pressing for autism insurance reform in Pennsylvania, and intends to lobby in other states for mandated coverage of these services.
November 8, 2007
Autism Speaks Named Official Charity of Z100 Jingle Ball 2007 Concert at Madison Square Garden
A Portion of Ticket Sales will Support the Organization’s Ongoing Research, Awareness and Family Service Efforts“Thanks to the support of great partners like Z100, we’re bringing our message of autism awareness to new audiences every day,” said Suzanne Wright, co-founder of Autism Speaks. “Z100’s Jingle Ball is one of the hottest tickets of the year, and Autism Speaks is thrilled to be a part of this exciting night.”
The increasing government funding, sponsored awareness programs, and growing research & development are also boosting the global market.
November 13, 2007
November 15, 2007
November 19, 2007
Autism Speaks “Ties-in” with the NFL on Fox for Thanksgiving Day Broadcast
Autism Speaks today announced a unique initiative that brings the organization’s awareness message to millions of fans watching traditional Thanksgiving Day football on FOX. As part of this special “tie-in,” NFL on FOX game and FOX NFL SUNDAY pre-game show broadcasters will wear ties, pins or scarves featuring Autism Speaks’ distinctive puzzle-piece logo on Thursday, Nov. 22.
Autism Speaks continually strives to find innovative ways to deliver our message of autism awareness to new audiences,” said Bob Wright, co-founder of Autism Speaks. “We thank FOX Sports and its NFL on FOX broadcasters for this remarkable opportunity to share information about autism, a disorder that now affects 1 in every 150 children.”
November 20, 2007
November 25, 2007
“I think it’s time we had a government and a president who recognized the seriousness of autism and addressed it head on,” Clinton told the crowd at a local Boy’s Club. She said she was at the club because of the work the organization does to provide services for children with autism.
Clinton’s plan would double investments in the National Institutes of Health’s efforts to identify the causes of the disorder, including possible environmental causes. Fully funding the “Combating Autism Act,” a Clinton co-sponsored bill that became law in 2006, would cost $200 million a year and would be covered by the senator’s initiative to increase the NIH budget by doubling it over 10 years.
The other $500 million would come from savings from improving government efficiency, said spokesman Jay Carson.
November 25, 2007
Autism Speaks Responds to Senator Clinton’s Call for Full Funding of the Combating Autism Act
Recognizing the autism epidemic as a national public health priority deserving of Presidential attention, Senator Hillary Clinton endorsed and detailed a number of policy positions long supported by Autism Speaks and its predecessor organizations and long-needed by the many American families facing the challenge of autism.
Specifically, Autism Speaks supports full funding of the programs authorized by the Combating Autism Act of 2006, enactment of the Expanding the Promise for Individuals with Autism Act (currently pending in both houses of Congress) including the addition proposed today by Senator Clinton for a teacher training component, and the principle articulated again today by Senator Clinton that evidence-based behavioral and biomedical interventions for autism should be available to all Americans who need them.
Autism Speaks is committed to ensuring that medically necessary services for individuals with autism are covered by private health insurance.November 27, 2007
An Unprecedented Global Effort to Increase Awareness about Autism Begins April 2, 2008
Autism is a health crisis that knows no geographic or political boundaries and demands an immediate global response,” added Mr. Wright. “The nation of Qatar is an ideal partner in this ambitious effort to raise awareness about autism and the need for action on every continent and in every nation.”
December 19, 2007
US House of Representatives Approves Funding for Combating Autism Act
$162 Million Appropriated to Fund Autism Research, Services and Treatment
The bill contains the following appropriations:
- Autism services, diagnosis and treatment at the Health Resources and Services Administration: $36,354,000, a $16.354 million increase over Fiscal 2007 ($37m was the level authorized by Combating Autism Act).
- Autism surveillance and awareness at the Centers for Disease Control and Prevention: $16.212 million, a $1.2m increase over Fiscal 2007 ($16.5m was the level authorized by the Combating Autism Act).
- An estimated $108.5 million for NIH-funded autism research.
- Implementation of the Interagency Autism Coordinating Committee (IACC): $1 million within the budget of the National Institute of Mental Health is earmarked for IACC implementation.
December 20, 2007
Autism Speaks Approves more than $565,000 in Family Services Community Grants
Although our primary mission at Autism Speaks is to identify more effective treatments and ultimately find a cure for autism, we are also committed to improving the quality of life for those affected by autism today,” said Peter Bell, executive vice president of programs and services at Autism Speaks, who also has a 14 year old son with autism.
“As the population of people affected by autism grows and ages up, it is imperative that we expand the field of autism services to help our children realize their full potential.”
December 26, 2007
President Signs Bill Authorizing Funding of Combating Autism Act
December 27, 2007
Autism Speaks Announces Multi-State Insurance Legislation Campaign
2008
2008 (110th Congress)
Bills lobbied by: Autism Speaks
S.2950 Helping HANDS for Autism Act of 2008
H.R.2370 Financial Security Accounts for Individuals with Disabilities Act of 2007
S.2743 Financial Security Accounts for Individuals with Disabilities Act of 2008
S.2741 Disability Savings Act of 2008
H.R.5658 Duncan Hunter National Defense Authorization Act for Fiscal Year 2009
H.R.6930 To amend title 10, United States Code, to authorize extended benefits for certain autistic dependents of certain retirees.
S.3230 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2009
S.3689 Economic Recovery Act of 2008
H.R.2642 Supplemental Appropriations Act, 2008
H.R.7110 Job Creation and Unemployment Relief Act of 2008
S.3604 Economic Recovery Act, 2008
H.R.2638 Consolidated Security, Disaster Assistance, and Continuing Appropriations Act, 200
March 3, 2008
Autism Speaks: A message from Bob and Suzanne Wright on World Autism Awareness Day.
April 17, 2008
2009
2009 (111th Congress)
Bills Lobbied By: Autism Speaks
S. 819 Autism Treatment Acceleration Act of 2009
H.R. 3200 America’s Affordable Health Choices Act of 2009
H.R. 2413 Autism Treatment Acceleration Act of 2009
S. 493 ABLE Act of 2009
H.R. 1205 ABLE Act of 2009
S. 1679 Affordable Health Choices Act
S. 1679 Affordable Health Choices Act
S. 706 Helping HANDS for Autism Act of 2009
H.R. 3293 Department of Education Appropriations Act, 2010
H.R. 2918 Continuing Appropriations Resolution
H.R. 1600 To amend title 10, United States Code, to provide for the treatment of autism under TRICARE.
H.R.3326 Department of Defense Appropriations Act, 2010
S. 1796 America’s Healthy Future Act of 2009
H.R. 3590 Patient Protection & Affordable Care Act
H.R. 3862 Preservation of Access to Care for Medicare Beneficiaries and Pension Relief Act of 2010
S. 1373 Federal Research Public Access Act of 2009
H.R. 1707 Helping HANDS for Autism Act of 2009
S. 914 Cures Acceleration Network and National Institutes of Health Reauthorization Act of 2009
H.R. 3288 Consolidated Appropriations Act, 2010
H.R. 1670 Community Choice Act of 2009
H.R. 2996 Department of the Interior, Environment, and Related Agencies Appropriations Act, 2010
S. 683 Community Choice Act of 2009
S. 1169 A bill to amend title 10, United States Code, to provide for the treatment of autism under TRICARE.
H.R. 1105 Omnibus Appropriations Act, 2009
H.R. 2 Children’s Health Insurance Program Reauthorization Act of 2009
H.R. 1 American Recovery and Reinvestment Act of 2009
H.R. 4247 Keeping All Students Safe Act
H.R. 2412 Filipino Veterans Family Reunification Act
S. 3230 NEPA Certainty Act
2009
Autism Treatment Acceleration Act of 2009 (S.819)
Lobbied by: Autism Speaks, America’s Health Insurance Plans, Aetna, American Academy of Pediatrics, American Occupational Therapy Assn, National Assn of Councils on Develop Disability, University of Iowa, American Heart Association, Kaiser Permanente
2009
Autism Treatment Acceleration Act of 2009 (H.R.2413)
Lobbied by: Autism Speaks, America’s Health Insurance Plans, American Ocuupational Therapy Assn, National Assn of Councils on Develop Disability, American Occupational Therapy Assn, American Academy of Pediatrics, Credit Union National Assn, Credit Union National Assn, Enterprise Community Parnters, Fleet Reserve Assn, General Electric, Iowa Farm Bureau, Kaiser Permanente, Manufactured Housing Institute, National Assn of Federa Credit Unions, National Assn of Home Builders, National Multifamily Housing Council, Radian Group
March 24, 2009
Autism Science Foundation (ASF) founded by Alison Tepper Singer & Karen Margulis London, parents of an Autistic.
March 25, 2009
April 2, 2009
Autism Treatment Acceleration Act of 2009 introduced in US Senate
“A key section of the bill requires all insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder (ASDs), including coverage of Applied Behavioral Analysis (ABA) therapy – a medically-necessary, evidence-based autism treatment. In most states, insurers are currently allowed to specifically exclude coverage for these critical services, which can cost upward of $50,000 a year – well beyond the means of most families.”
July 23, 2009
Autism Speaks: Rep. Mike Doyle Makes Historic Pledge to the Autism Community
“In his opening remarks this week during the House Energy and Commerce Committee markup of HR 3200, the America’s Affordable Health Choices Act of 2009, Congressman Mike Doyle (D-PA), chair of the Congressional Autism Caucus, pledged that any health care reform bill that does not put an end to autism insurance discrimination is unacceptable.”
November 17, 2009
ASAN protest against Autism Speaks in New York City
Autistic Self Advocacy Network with Ari Ne’eman held signs and handed out flyers to Autism Speaks sponsors going to the New York City concert with Bruce Springsteen and Jerry Seinfield.
December 4, 2009
Autism Speaks Announces ReThink Partnership & Free Webinar
Autism Speaks in partnership with Rethink Autism will present a free live webinar, What You Need to Know, an orientation for parents and family members of children recently diagnosed with an autism spectrum disorder.
The webinar was hosted by Lisa Goring, director of Family Services at Autism Speaks, and Dr. Bridget A. Taylor, senior clinical advisor at ReThink Autism.
2010
2010 (111th Congress)
Bills lobbied by: Autism Speaks
H.R. 1205 ABLE Act of 2009
S. 819 Autism Treatment Acceleration Act of 2009
H.R. 2413 Autism Treatment Acceleration Act of 2009
S. 493 ABLE Act of 2009
H.R. 3200 America’s Affordable Health Choices Act of 2009
H.R. 1670 Community Choice Act of 2009
S. 683 Community Choice Act of 2009
H.R. 1707 Helping HANDS for Autism Act of 2009
H.R. 5756 TRAIN Act of 2010
H.R. 1600 To amend title 10, United States Code, to provide for the treatment of autism under TRICARE.
H.R. 4782 Health Care and Education Reconciliation Act of 2010
S. 1373 Federal Research Public Access Act of 2009
H.R. 4147 Keeping All Students Safe Act
S. 1796 America’s Healthy Future Act of 2009
H.R. 3590 Patient Protection & Affordable Care Act
S. 706 Helping HANDS for Autism Act of 2009
H.R.3962 Preservation of Access to Care for Medicare Beneficiaries and Pension Relief Act of 2010
S. 2860 Preventing Harmful Restraint and Seclusion in Schools Act
S. 1796 Affordable Health Choices Act
S. 3800 Department of Defense Appropriations Act, 2011
S. 1169 A bill to amend title 10, United States Code, to provide for the treatment of autism under TRICARE.
S. 3686 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2011
S. 4044 Combating Autism Reauthorization Act of 2010
H.R. 3081 Continuing Appropriations Act, 2011
S. 914 Cures Acceleration Network and National Institutes of Health Reauthorization Act of 2009
February 22, 2010
ReThink: Parents of Children With Autism Worldwide Can Now Help Their Children Learn at Home
April 12, 2010
Maine enacts autism insurance reform to cover ABA.
Included: Peter Bowman, John Baldacci
April 14, 2010
Kentucky enacts autism insurance reform to cover ABA
Included: Jeff Greer, Tom Buford, Julie Denton,Brandon Smith, Robert Stivers, Anne Gregory, Scott W. Brinkman, Ray Jones,
April 27, 2010
April 29, 2010
Iowa enacts autism insurance reform to cover ABA
Included: Mark Kuhn, Christopher Rants, Daryl Beall, Josh Cobbs, Ray S. Zirkelbach, Chet Culver,
Also: Iowa Autism Council
June 15, 2010
Rethink: Wisconsin Extends Medicaid Waiver to Cover Innovative Web-Based Autism Treatment Program
July 23, 2010
New Hampshire enacts autism insurance reform to cover ABA
Included: Maggie Hassan, Kristin Murphy, John Lynch
Also: New Hampshire Council on Autism Spectrum Disorders, Autism Society of New Hampshire
2011
2011
February 28, 2011
Autistic Women & Non-Binary Network (AWN) founded by Sharon daVanpo
Board/Staff/Contributors: Lydia X. Z. Brown, Emily Paige Ballou, Corina Becker, Jessica Horvath Williams, Lei Wiley-Mydske, Kayley Whalen, Morénike Giwa Onaiwu, Lori Berkowitz, Erin Casey, Jean Winegardner, Court (Alison) Falk, Mara Fritts, Victoria M. Rodríguez-Roldán, Kayla Rodriguez, Elesia Ashkenazy, Amy Sequenzia, Reese Piper, Hannah Morrison, C.L. Bridge, Nadine Silber, Kit Mead
March 4, 2011
Arkansas enacts autism insurance reform to include coverage of ABA
Included: Uvalde Lindsey , Mary Anne Salmon,
March 21, 2011
Arizona enacts autism insurance reform to include coverage of ABA.
Included: Jan Brewer, Amanda Aguirre, Char Ugol, Lisa Glow, Melissa Van Hook,James Adams, Carolyn Warden
Also: Autism Society of America, Greater Phoenix Chapter; ASA Pima County and Northern Arizona Chapter; Supporting Autism Now through Education (SANE); Asperger Parent Network; Arizona Autism Coalition; Arizona Autism Support; Southwest Autism Research & Resource Center (SARRC), Recover our Kids (ROK), and the Center for Autism and Related Disorders (CARD), among others.
April 1, 2011
West Virginia enacts autism insurance reform to cover ABA
Included: EarlRay Tomblin, Barbara Evans Fleischauer, Evan H. Jenkins, Earlene Anglin
“Certified Behavior Analyst Jill McLaury says 30 years of research show about half of all children get involved in Applied Behavior Analysis therapy, or ABA, early-on in their diagnosis will eventually lose almost all of their symptoms. Another 40% will see at least some improvement.
ABA is not covered by insurance companies in West Virginia.
“It’s just flat discrimination; I mean we just don’t cover autism,” said McLaury.
April 3, 2011
CBS News: Autism Speaks spreads awareness with “Light It Up Blue”
Bob and Suzanne Wright, the founders of Autism Speaks, spoke with Lauren Wanko to discuss World Autism Awareness Day, which shines a bright light on autism as a growing global health crisis.
June 9, 2011
Autism’s new venture capitalists: Laura Slatkin and Ilene Lainer are teaming up with hedge fund giant Jim Simons to create a new resource for people with autism
June 9, 2011
New England Center for Children is mentioned in an article with Laura Slatkin, co-founder of NEXT for Autism and board member for Autism Speaks.
Laura Slatkin’s son attends the residential school in Boston, Massachusetts.
June 13, 2011
Adopted by forty-two states, the U.S. Virgin Islands and the District of Columbia
Stakeholders: content experts, states, teachers, school administrators and parents (Note: Absent is the largest stakeholders for ReThink Autism: Autistic people.)
June 30, 2011
Rhode Island enacts autism insurance reform to cover ABA
Included: Lincoln Chafee, Peter Palumbo, Edward O’Neill, Teresa Paiva-Weed
July 21, 2011
Autism Speaks: Autism Votes 100,000 Advocates Strong
August 31, 2011
September 7, 2011
Autism Speaks: Countdown to CARA: On to the Senate!
September 20, 2011
Autism Speaks: President Obama Signs Landmark Combating Autism Act
September 30, 2011
Autism Speaks: President Obama Signs CAREA
October 9, 2011
California enacts autism insurance reform to cover ABA.
Included: Jim Beall Jr.,Jerry Brown,Gavin Newsom, Don Perata, Darrell Steinberg, Lorri Unumb, Alliance of California Autism Organizations (ACAO), CA Legislative Blue Ribbon Commission, Department of Managed Health Care (DMHC), Autism Speaks, Autism Votes
October 11, 2011
Autism Speaks: ‘Autism treatment law again shows insurers’ need for therapy’
“The only people who don’t think of behavioral therapies as a medical treatment are insurance companies,” said Kristin Jacobson, co-founder of the Alliance of California Autism Organizations and a leading proponent of the new state mandate.
“The rest of the medical community is united in seeing these treatments as medically necessary,” she said.
October 31, 2011
Autism Speaks: Keep Going, Keep Making a Difference w/Kerry Magro
November 1, 2011
New York passes autism insurance reform to cover ABA
Included: Andrew Cuomo, Joseph Morelle, Charles Fuschillo, Jr., Neil Breslin, Thomas Duane
2012
2012
ReThink Addition To The Board: Maurice Feldman
February 28, 2011
Autistic Women & Non-Binary Network (AWN) founded by Sharon daVanpo
Board/Staff/Contributors: Lydia X. Z. Brown, Emily Paige Ballou, Corina Becker, Jessica Horvath Williams, Lei Wiley-Mydske, Kayley Whalen, Morénike Giwa Onaiwu, Lori Berkowitz, Erin Casey, Jean Winegardner, Court (Alison) Falk, Mara Fritts, Victoria M. Rodríguez-Roldán, Kayla Rodriguez, Elesia Ashkenazy, Amy Sequenzia, Reese Piper, Hannah Morrison, C.L. Bridge, Nadine Silber, Kit Mead
March 15, 2012
Matthew Asner of Autism Speaks
Southern California Executive Director of Autism Speaks, Matthew Asner, sits down with ACT-Today Executive Director, Nancy Alspaugh-Jackson, to discuss his new role at Autism Speaks and his experience as a father of a child with autism.
Skills Live is a production of the Center for Autism and Related Disorders (CARD), headquartered in Tarzana, California, and with offices throughout the United States and around the globe.
March 31, 2012
Video: Early diagnoses, intervention keys when autism suspected
A new federal study says one-in-88 children has at least some symptoms of autism, many more than previously thought. Bob and Suzanne Wright, who founded Autism Speaks in 2005 after their grandson was diagnosed with the disorder, talked to Rebecca Jarvis about the challenges faced by families with kids with autism. Bob Wright is the former chairman of NBC Universal.
April 28, 2012
the Distance for Autism 2012 in Paramus, NJ with Alpine Learning Group
October 5, 2012
The Âûtistic Union is founded and Autistic-led.
2013
2013
May 23, 2013
Minnesota enacts autism insurance reform to cover ABA
Included: Kim Norton, Linda Scheid, Mark Dayton,
October 10, 2013
August 15, 2013
Oregon enacts autism insurance reform to cover ABA
Included: Peter Buckley, Jim Thompson, Chris Edwards, Suzanne Bonamici , Alan Bates, John Kitzhaber, Chip Shields
2014
April 8, 2014
#StopCombatingMe from ASAN
April 2, 2014
Utah enacts autism insurance reform to include ABA: Gary Herbert, Mike Wasmer, Brian Shiozawa, Scott Jenkins, Todd Weiler , Deidre Henderson, Karen Mayne, Howard A. Stephenson, Jon Owen, Ronda Menlove, Kelly Atkinson, Utah Health Insurance Association
Also: Utah Autism Coalition, Utah Health Insurance Association
The Salt Lake Tribune: ‘Utah autism treatment pilot struggles for funding’
Utah Medicaid Program Opens Monday for 250 Children
Autism Speaks | Utah Ups Medicaid Pay for ABA Providers |
“ABA • It has been used since the ’60s to help people with autism. Through positive reinforcement, children can acquire basic skills, including looking, listening and imitating, the advocacy group Autism Speaks says.
In some cases • Preschoolers who have intensive therapy can eventually participate in regular classrooms with little extra support. But some show no improvement, so it is hard to predict how much each child will benefit.”
Utah: New Year, New Bill, Same Goal
“Autism Speaks joins Utah’s autism community in calling on the legislature to pass S.55 and join the growing majority of states that have ended healthcare discrimination against children with autism.”
“According to reports in The Salt Lake Tribune, the Medicaid program was hindered by low reimbursement rates which limited the number of providers, while the private sector contributions were slow to materialize. In the meantime, it cited 20 cases of parents surrendering their children to the state because they could not afford to provide them the autism treatments they needed.”
April 24, 2014
Nebraska enacts autism insurance reform to cover ABA
People: Dave Heineman, Colby Coash, Cathy Martinez, Melissa Schop, Mike Wasmer, Melissa Schop,
Also: Autism Society of Nebraska, Autism Family Network
April 25, 2014
Autism Speaks | Licensing Struck Down As Basis For ABA Denials in California
The licensing issue has been raised in a host of states following the enactment of autism insurance reform laws. Implementation of New York state’s 2011 law was delayed for months until lawmakers addressed the issue through new legislation.
“While there can be no doubt that the treatment plan for providing ABA to any autistic child must be established, modified, and supervised by a qualified expert in ABA, the evidence in this case indicates that the actual delivery of services to the child may be performed by a non-expert,” wrote Associate Justice Patti Kitching in the majority opinion.
“It appears that ABA, and similar behavior therapies, are somewhat unique among medical treatments in this respect,” the court found. “While the treatment plan must be created, modified, and supervised by a professional, a paraprofessional may actually deliver the services.”
Autism Speaks argued that unlicensed providers delivered care for years in California abiding by national standards and with no objection from the state, specifically citing the Regional Centers.
“As reflected by SB946, the Legislature has concluded that BCBAs are appropriate and necessary providers to meet these healthcare needs,” according to the brief, which was prepared by Dan Unumb, executive director of the Legal Resource Center.
May 5, 2014
Maryland enacts autism insurance reform to cover ABA.
Included: Kirill Reznik, Kathy Klausmeier, Doug Gansler
Also: Autism Society of America, Pathfinders for Autism, SEIU 500, Arc of Frederick County, Easter Seals, The Association of University Centers on Disabilities
August 6, 2014
November 15, 2014
Washington enacts autism insurance reform to cover ABA
Include: Ed Murray, Brendan Williams, Steve Hobbs
Also: Washington Autism Alliance & Advocacy
2015
April 29, 2015
Georgia enacts autism insurance reform to cover ABA.
Included: Johnny Grant, Katie Dempsey, Tim Golden, Nathan Deal,
March 19, 2015
South Dakota enacted autism insurance reform to cover ABA
Included: Dennis Daugaard, Alan Salano, Corey Brown, Time Rave, Scott Munsterman, Justin Cronin, Brian Gosch, Steve Westra, Gloria Pearson, Marcia Hultman, Scott Ecklund, Charlie Hoffman,
July 13, 2015
Hawaii enacts autism insurance reform to cover ABA.
Included: Will Espero, Maile S. L. Shimabukuro, Josh Green, Russell Ruderman
October 15, 2015
North Carolina enacts autism insurance reform to cover ABA
Included: William R. Purcell, Bob England,Pat McCrory, Tom Apodaca, Joyce Krawiec, Chuck McGrady, Shea Capps
2016
March 29, 2016
Bob Wright, Co-founder of Autism Speaks
Former NBC CEO Bob Wright sits down with Matt Lauer to talk about his new book, “The Wright Stuff,” which chronicles his NBC tenure as well as his co-founding of Autism Speaks, an organization to help families dealing with an autism diagnosis, as his has. He also candidly discusses his wife Suzanne’s pancreatic cancer diagnosis. Hoda and Matt Lauer that he’s just too stubborn to die.
March 31, 2016
The Centers for Disease Control and Prevention (CDC) today released its newest estimate of autism prevalence among the nation’s children. The report shows that, overall, less than half the children identified with autism (43 percent) had received comprehensive developmental evaluations by age 3. This proved true despite the fact that the vast majority (87 percent) had developmental concerns noted in their medical or educational records before age 3. Currently, autism can be reliably diagnosed by age 2, with earlier diagnosis affording greater opportunities for intervention that supports healthy development and improves function and quality of life.
In response to these findings, Autism Speaks calls on legislators, public health agencies, the National Institutes of Health and others to join in urgently advancing programs such as universal autism screening for toddlers and enhanced and expanded early intervention services – as well as the personalized medical care, support and resources needed by the growing numbers of people with autism now reaching adulthood.
(Note: Early intervention = early ABA = $$$)
February 15, 2016
About.com: Parents Become ABA Therapists with “Rethink Autism”
May 5, 2016
Oklahoma enacts autism insurance reform to cover ABA
Included: Mary Fallin, AJ Griffin, Jason Nelson, Tara Hood,
2017
January 12, 2017
Autistics Against Autism Speaks: A Civil Rights Movement
January 4, 2017
Ohio enacts autism insurance reform to cover ABA
People: Ted Celeste, Nancy Garland, Doug Krinsky,Cheryl Grossman, John Kasich, Marci Ingram
January 17, 2017
Fashion designer Tommy Hilfiger spoke Monday at the Palm Beach Civic Association about his role on the board of Autism Speaks.
February 5, 2016
February 5, 2016, Donald Trump shares a video message to Suzanne. Trump thanks Suzanne for her years of advocacy at Autism Speaks, and promises to light the White House blue in her honor, for World Autism Awareness Day.
November 3, 2017
The Autistic Cooperative (TAC) is founded by John Greally& Kieran Rose.
Co-founders: Fae Wren, Emma Dalmayne, Lyric Holmans, Eve Reiland, Matt Bevan, Maqqi Mucoi Amolngatti Âû, Fiona Clarke, Hannah Quinton, Liisa Andrews
Autistic Inclusive Meets (AIM) is founded by Emma Dalmayne
Board/Staff: Sara Challinger, Alexandra Foreshaw, Amy Bresnahan, William Vanderpuije, Jenny Payne, Sab Samuel, David Courtney, Amanda Seigler
2018
2018
Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis
Henny Kupferstein
“Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.”
“One of many emerging pieces of research, none of which are a surprise, since ABA requires autistic people to mask being autistic. No different to asking a gay person to mask being gay. Not healthy.” – Ann Memmott
January 2018
“Stressful and traumatic life events should be considered by clinical practitioners when conducting assessments and determining appropriate treatment plans for people with ASD experiencing comorbid symptomatology and or/an exacerbation of core ASD symptoms to help ensure that underlying causes of these symptoms are not overlooked.”
“Research in that one shows that too many behaviourists are not checking for underlying mental health conditions before applying behavioural ‘therapies’ to autistic people. Often also failing to note that the person has PTSD, so thinking it’s just autism causing the ‘behaviours’ and the person is being ‘challenging’.
As many behaviourists are unqualified in autism or mental health conditions, (let alone the highly specialist interplay of autism and PTSD), hardly surprising. There is clear potential for harm.” – Ann Memmott
February 12, 2018
A Study Pointing Out That ABA Doesn’t Work
Published online by Cambridge University Press.
Results
No treatment effects were found for the primary outcome (challenging behaviour over 12 months, adjusted mean difference = −2.14, 95% CI: −8.79, 4.51) or secondary outcomes.
Conclusions
Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour.
(‘ABA’ often now rebranded as Positive Behaviour Support)
“Big research study. 3 yrs. 2018… .
Oh dear. Next time someone says ‘gold standard’, refer to the study and ask them what they mean.” – Ann MemmottMay 9, 2018
A Study Pointing Out That ABA Doesn’t Work
Authors’ conclusions:
There is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD; the strength of the evidence in this review is limited because it mostly comes from small studies that are not of the optimum design. Due to the inclusion of non-randomized studies, there is a high risk of bias and we rated the overall quality of evidence as ‘low’ or ‘very low’ using the GRADE system, meaning further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate.
“That one is the Cochrane Review. The ultimate independent audit of whether early-interventions such as Applied Behaviour Analysis (‘ABA’ often now rebranded as Positive Behaviour Support) improve autistic lives.
Conclusion – nope, not proven. Weak evidence of vague improvement after two years of effort, which frankly could be achieved by anyone after two years. Children grow up. They learn skills with or without ABA. This is awkward, isn’t it.” – Ann Memmott
July 2018
Risk markers for suicidality in autistic adults
“Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. “
“The research in that one is worrying, frankly. Cassidy & team noted that if autistic people are having to mask their autism (which most behaviourist approaches teach them to do), their risk of suicide rises. . …Are we normalising autistic children at the later cost of their lives? For whose benefit? I leave the questions there.” – Ann Memmott
August 10, 2018
We are not OK | By Kieran Rose: The Autistic Advocate
“The pressure we are put under by Society, by the people in charge, the people we work for and with, our friends, our family; and people who we don’t know and whom will never know us, to act in the way that they insist we do, is immense. Overbearing. Backbreaking.
The price we pay for refusal is greater than the price we pay for doing our damnedest to conform.
Some of us, particularly Autistic people of Colour, particular Autistic people in countries where the view of Autism is archaic, often hateful, pay an even greater price than me every time their Mask slips.
All Autistic people pay for our safety and your comfort with OUR lives.” – Kieran Rose
2019
January 23, 2019
National Council on Severe Autism (NCSA) is founded by Jill Escher, Feda Almaliti, Amy Lutz, Alison Singer
April 19, 2019
September 19, 2019
Autism Speaks applauds the passage of the Autism CARES Act of 2019
November 25, 2019
Project AIM: Autism intervention meta-analysis for studies of young children
“In other words, they haven’t been shown to work. It’s not getting better, is it… on we go…” – Ann Memmott
October 25, 2019
“The majority of TRICARE beneficiaries (76 percent – parent form) had little to no change in symptom presentation over the course of 12 months of ABA services, with an additional nine percent demonstrating worsening symptoms.”
“If you are paying for ABA or PBS ‘treatments’ for autistic people, it’s wise to be aware of this type of Government level research showing that you might as well be buying the children a lollipop (generalising). PS, buying a lollipop is not an actual recommendation, to be clear.” – Ann Memmott
2020
2020
“Randomised trial. Big numbers. No evidence that PBS works to improve ‘behaviour’ for those who are autistic and have a learning disability. Anyone who is paying a fortune to commission this for people needs to have a serious, quiet read, and ask some equally serious, quiet questions of the people selling the stuff to them.” – Ann Memmott
March 2020
Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”
Daniel A. Wilkenfeld, Allison M. McCarthy
Kennedy Institute of Ethics Journal, Volume 30, Number 1, March 2020, pp. 31-69 (Article)
Published by Johns Hopkins University PressJuly 2020
This review found limited evidence that early intensive applied behaviour analysis-based interventions improve cognitive ability and adaptive behaviour in autistic children, but the long-term impact of the interventions remains unknown.
July 25, 2020
The Department of Defense Comprehensive Autism Care Demonstration Annual Report
“As of now, ABA services do not meet the TRICARE hierarchy of evidence standard for medical and proven care. The Department continues to review the latest evidence in published literature regarding the effectiveness for ASD.At this time, no significant additions to the evidence based literature have been published since the last annual report regarding the “dose- response” (including intensity, frequency, or duration), treatment effectiveness, most effective use of ABA with other services, use of tiered model compared to BCBAs only, benchmarks for outcomes or anticipated/expected changes in ASD symptom presentation.”
August 18, 2020
Rightful Live Investigates Behavioural Analysis and Support
Alexis Quinn about how the ‘gold standard’ behaviourist approaches do the exact opposite to what’s needed, for so many autistic people. Powerful content with mention of self harm and suicide.( via Ann Memmot’s Blog)
Rightful Lives is launching an investigation in to methods of behavioural treatment, Applied Behaviour Analysis (ABA) and Positive Behaviour Support (PBS) for learning disabled and /or autistic people in Britain.
ABA & PBS have people divided- some see them as a way to enable autistic people to take part in everyday life and others as a human rights abuse. In this investigation we aim to get behind this polarised debate and understand the issues more fully.
Alexis Quinn kicks this investigation off by introducing her experience of behavioural support and the impact it had on her as an autistic woman. Alexis Quinn is the author of the book Unbroken, which tells the story of her incarceration in the British mental health system.
2021
2021
Key Players In The Autism Market
UPMC, The May Institute, Chance Light Behavioural Health, Autism Speaks, Centria Autism Services, The Centre for Autism & Related Disorders, Butterfly Effects, Autism Learning Partners, Autism Spectrum Therapies, City Pro Group, Vista Autism Services, Allergan, Johnson & Johnson, Pfizer Inc., Eli Lilly and Company, Otsuka Holdings Co. Ltd., Magellan Health, Inc.
January 12, 2021
Death by Suicide Among People With Autism: Beyond Zebrafish
“Another important issue is the belief that autistic individuals should camouflage or mask their autistic traits to conform with societal expectations, for example by forcing themselves to make eye contact with others even when doing so is uncomfortable.
It is essential to ask autistic people about the underlying motivations for their behaviors, which may be different than clinicians and caregivers assume. One helpful question about camouflaging is how much effort the person expends trying to perform as they think others require them to. Quantitative and qualitative research studies show that such camouflaging is exhausting and is associated with poor mental health, including suicidal thoughts and behavior.
This has important implications for many interventions, including social skills training and behavioral therapies that aim to normalize appearance and behavior at the risk of exacerbating a disconnect between the true self and performing self, potentially increasing anxiety and decreasing self-esteem.”
March 17, 2021
The man behind ex-gay “conversion therapy” started out trying to make autistic children “normal”
By Sebastian
Both projects were based on the same fundamental view: that it’s easier to change a child’s behavior than it is to destigmatize that behavior in society–whether it’s limp wrists or flapping hands.
April 9, 2021
Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, and Zane
Aileen H. Sandoval-Norton, Gary Shkedy & Dalia Shkedy
Results
Despite decades of usage as the primary method for this population worldwide, ABA has never been shown to be even slightly efficacious for the nonverbal Autism population.
Conclusions
Research in ABA continues to neglect the structure the autistic brain, the overstimulation of the autistic brain, the trajectory of child development, or the complex nature of human psychology, as all of these factors were ignored in the response and are ignored in ABA practice itself. Providing a treatment that causes pain in exchange for no benefit, even if unknowingly, is tantamount to torture and violates the most basic requirement of any therapy, to do no harm.
April 28, 2021
Autism Speaks launches Autism Care Network to improve autism care across North America
The 20 Autism Care Network sites are:
- Children’s Hospital Los Angeles
- Children’s Hospital of Philadelphia
- The Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital Medical Center
- The Lurie Center for Autism at the Massachusetts General Hospital for Children
- Nationwide Children’s Hospital, Columbus, Ohio
- Holland Bloorview Kids Rehabilitation Hospital, Toronto
- University of Alberta and Glenrose Rehabilitation Hospital
- The Center for Autism & Neurodevelopmental Disorders at the University of California — Irvine
- University of Missouri – ECHO Autism Communities
- The Center for Autism and Developmental Disorders at the University of Pittsburgh Medical Center
- Vanderbilt Kennedy Center at Vanderbilt University Medical Center
- The Division of Developmental and Behavioral Pediatrics at the University of Rochester Medical Center
- Phoenix Children’s Hospital
- Prisma Health Children’s Hospital-Upstate SC
- University of Nebraska Medical Center, Munroe-Meyer Institute
- University of Virginia Children’s Hospital-Division of Neurodevelopmental and Behavioral Pediatrics
- University of Wisconsin-Madison, Waisman Center
- Hospital for Special Care, New Britain, Connecticut
- The Eunice Kennedy Shriver Center at University of Massachusetts Medical School, Center for Autism and Neurodevelopmental Disorders
- MetroHealth Autism Assessment Clinic, Parma, Ohio
July 12, 2021
August 5, 2021
Their Non-Autistic Led “Autism Awareness” Campaigns Drive The Global Market For ABA By The Billions
Harmful autism awareness campaigns by non-Autistic led organizations and entities are driving the success of the ABA Market.
This market, known as the “Autism Market,” is projected to reach $4.53 Billion by 2026 in the United States.
The prevalence of autism and success of ‘autism awareness’ campaigns by non-autistic led organizations are driving the global market for applied behavioral analysis (ABA).
The increasing government funding, sponsored awareness programs, and growing research & development are also boosting the global market.
September 2021
What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms
“We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people’s functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.“
“A recent (2021) paper on poor mental health outcomes and burnout from forcing autistic people to live totally inauthentic lives, including links between masking and suicide.” – Ann Memmott
October 18, 2021
October 21, 2021
ReThink First: Our Team
People: Daniel Etra, Eran Rosenthal, Patty Mah, Jamie Pagliaro, Mike Civello, Lin Chong, Diana Frezza, Margarita Burakov , Bridget A. Taylor, Peter F. Gerhardt, Catherine E. Lord, Louis A. Vismara, Patricia Wright, Maurice Feldman
2022
January 27, 2022
Note/Warning:
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.
International Badass Activists 